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1. Electrodiagnostic subtyping in Guillain–Barré syndrome patients in the International Guillain–Barré Outcome Study

Author

Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., Zivkovic S. A., Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., and Zivkovic S. A.

Abstract

Background and purpose: Various electrodiagnostic criteria have been developed in Guillain–Barré syndrome (GBS). Their performance in a broad representation of GBS patients has not been evaluated. Motor conduction data from the International GBS Outcome Study (IGOS) cohort were used to compare two widely used criterion sets and relate these to diagnostic amyotrophic lateral sclerosis criteria. Methods: From the first 1500 patients in IGOS, nerve conduction studies from 1137 (75.8%) were available for the current study. These patients were classified according to nerve conduction studies criteria proposed by Hadden and Rajabally. Results: Of the 1137 studies, 68.3% (N = 777) were classified identically according to criteria by Hadden and Rajabally: 111 (9.8%) axonal, 366 (32.2%) demyelinating, 195 (17.2%) equivocal, 35 (3.1%) inexcitable and 70 (6.2%) normal. Thus, 360 studies (31.7%) were classified differently. The areas of differences were as follows: 155 studies (13.6%) classified as demyelinating by Hadden and axonal by Rajabally; 122 studies (10.7%) classified as demyelinating by Hadden and equivocal by Rajabally; and 75 studies (6.6%) classified as equivocal by Hadden and axonal by Rajabally. Due to more strictly defined cutoffs fewer patients fulfilled demyelinating criteria by Rajabally than by Hadden, making more patients eligible for axonal or equivocal classification by Rajabally. In 234 (68.6%) axonal studies by Rajabally the revised El Escorial (amyotrophic lateral sclerosis) criteria were fulfilled; in axonal cases by Hadden this was 1.8%. Conclusions and discussion: This study shows that electrodiagnosis in GBS is dependent on the criterion set utilized, both of which are based on expert opinion. Reappraisal of electrodiagnostic subtyping in GBS is warranted.

Published
2024

2. Predicting respiratory failure and outcome in pediatric Guillain-Barré syndrome

Author

Korinthenberg, R., Roodbol, J., de Wit, M.C.Y., Catsman-Berrevoets, C.E., Jacobs, B.C., Engelen, M., Erasmus, C.E., Geleijns, C.P.W., Kotsopoulos, I.A.W., Nicolai, J., Niermeijer, J.M.F., Niks, E.H., Samijn, J., Roodbol, Joyce, Korinthenberg, Rudolf, Venema, Esmee, de Wit, Marie-Claire Y., Lingsma, Hester F., Catsman-Berrevoets, Coriene E., and Jacobs, Bart C.

Published
2023
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3. CSF Findings in Relation to Clinical Characteristics, Subtype, and Disease Course in Patients With Guillain-Barré Syndrome

Author

Al-Hakem, H, Doets, A, Stino, A, Zivkovic, S, Andersen, H, Willison, H, Cornblath, D, Gorson, K, Islam, Z, Mohammad, Q, Sindrup, S, Kusunoki, S, Davidson, A, Casasnovas, C, Bateman, K, Miller, J, Van Den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Arends, S, Luijten, L, Benedetti, L, Kuwabara, S, Van Den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Pereon, Y, Burmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Tous, M, Querol, L, Martin-Aguilar, L, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Waheed, W, Lehmann, H, Granit, V, Stein, B, Cavaletti, G, Gutierrez-Gutierrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, Van Der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Jacobus Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Kolb, N, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Kramers, H, Busby, M, Roberts, R, Silvestri, N, Fazio, R, Van Dijk, G, Garssen, M, Verschuuren, J, Harbo, T, Jacobs, B, Al-Hakem H., Doets A. Y., Stino A. M., Zivkovic S. A., Andersen H., Willison H. J., Cornblath D. R., Gorson K. C., Islam Z., Mohammad Q. D., Sindrup So. H., Kusunoki S., Davidson A., Casasnovas C., Bateman K., Miller J. A. L., Van Den Berg B., Verboon C., Roodbol J., Leonhard S. E., Arends S., Luijten L. W. G., Benedetti L., Kuwabara S., Van Den Bergh P., Monges S., Marfia G. A., Shahrizaila N., Galassi G., Pereon Y., Burmann J., Kuitwaard K., Kleyweg R. P., Marchesoni C., Tous M. J. S., Querol L., Martin-Aguilar L., Wang Y., Nobile-Orazio E., Rinaldi S., Schenone A., Pardo J., Vermeij F. H., Waheed W., Lehmann H. C., Granit V., Stein B., Cavaletti G., Gutierrez-Gutierrez G., Barroso F. A., Visser L. H., Katzberg H. D., Dardiotis E., Attarian S., Van Der Kooi A. J., Eftimov F., Wirtz P. W., Samijn J. P. A., Jacobus Gilhuis H., Hadden R. D. M., Holt J. K. L., Sheikh K. A., Kolb N., Karafiath S., Vytopil M., Antonini G., Feasby T. E., Faber C., Kramers H., Busby M., Roberts R. C., Silvestri N. J., Fazio R., Van Dijk G. W., Garssen M. P. J., Verschuuren J., Harbo T., Jacobs B. C., Al-Hakem, H, Doets, A, Stino, A, Zivkovic, S, Andersen, H, Willison, H, Cornblath, D, Gorson, K, Islam, Z, Mohammad, Q, Sindrup, S, Kusunoki, S, Davidson, A, Casasnovas, C, Bateman, K, Miller, J, Van Den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Arends, S, Luijten, L, Benedetti, L, Kuwabara, S, Van Den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Pereon, Y, Burmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Tous, M, Querol, L, Martin-Aguilar, L, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Waheed, W, Lehmann, H, Granit, V, Stein, B, Cavaletti, G, Gutierrez-Gutierrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, Van Der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Jacobus Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Kolb, N, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Kramers, H, Busby, M, Roberts, R, Silvestri, N, Fazio, R, Van Dijk, G, Garssen, M, Verschuuren, J, Harbo, T, Jacobs, B, Al-Hakem H., Doets A. Y., Stino A. M., Zivkovic S. A., Andersen H., Willison H. J., Cornblath D. R., Gorson K. C., Islam Z., Mohammad Q. D., Sindrup So. H., Kusunoki S., Davidson A., Casasnovas C., Bateman K., Miller J. A. L., Van Den Berg B., Verboon C., Roodbol J., Leonhard S. E., Arends S., Luijten L. W. G., Benedetti L., Kuwabara S., Van Den Bergh P., Monges S., Marfia G. A., Shahrizaila N., Galassi G., Pereon Y., Burmann J., Kuitwaard K., Kleyweg R. P., Marchesoni C., Tous M. J. S., Querol L., Martin-Aguilar L., Wang Y., Nobile-Orazio E., Rinaldi S., Schenone A., Pardo J., Vermeij F. H., Waheed W., Lehmann H. C., Granit V., Stein B., Cavaletti G., Gutierrez-Gutierrez G., Barroso F. A., Visser L. H., Katzberg H. D., Dardiotis E., Attarian S., Van Der Kooi A. J., Eftimov F., Wirtz P. W., Samijn J. P. A., Jacobus Gilhuis H., Hadden R. D. M., Holt J. K. L., Sheikh K. A., Kolb N., Karafiath S., Vytopil M., Antonini G., Feasby T. E., Faber C., Kramers H., Busby M., Roberts R. C., Silvestri N. J., Fazio R., Van Dijk G. W., Garssen M. P. J., Verschuuren J., Harbo T., and Jacobs B. C.

Abstract

Background and ObjectivesTo investigate CSF findings in relation to clinical and electrodiagnostic subtypes, severity, and outcome of Guillain-Barré syndrome (GBS) based on 1,500 patients in the International GBS Outcome Study.MethodsAlbuminocytologic dissociation (ACD) was defined as an increased protein level (>0.45 g/L) in the absence of elevated white cell count (<50 cells/L). We excluded 124 (8%) patients because of other diagnoses, protocol violation, or insufficient data. The CSF was examined in 1,231 patients (89%).ResultsIn 846 (70%) patients, CSF examination showed ACD, which increased with time from weakness onset: ≤4 days 57%, >4 days 84%. High CSF protein levels were associated with a demyelinating subtype, proximal or global muscle weakness, and a reduced likelihood of being able to run at week 2 (odds ratio [OR] 0.42, 95% CI 0.25-0.70; p = 0.001) and week 4 (OR 0.44, 95% CI 0.27-0.72; p = 0.001). Patients with the Miller Fisher syndrome, distal predominant weakness, and normal or equivocal nerve conduction studies were more likely to have lower CSF protein levels. CSF cell count was <5 cells/L in 1,005 patients (83%), 5-49 cells/L in 200 patients (16%), and ≥50 cells/L in 13 patients (1%).DiscussionACD is a common finding in GBS, but normal protein levels do not exclude this diagnosis. High CSF protein level is associated with an early severe disease course and a demyelinating subtype. Elevated CSF cell count, rarely ≥50 cells/L, is compatible with GBS after a thorough exclusion of alternative diagnoses.Classification of EvidenceThis study provides Class IV evidence that CSF ACD (defined by the Brighton Collaboration) is common in patients with GBS.

Published
2023

4. Incidence and outcome of acquired demyelinating syndromes in Dutch children: update of a nationwide and prospective study

Author

de Mol, C. L., Wong, Y. Y. M., van Pelt, E. D., Ketelslegers, I. A., Bakker, D. P., Boon, M., Braun, K. P. J., van Dijk, K. G. J., Eikelenboom, M. J., Engelen, M., Geleijns, K., Haaxma, C. A., Niermeijer, J. M. F., Niks, E. H., Peeters, E. A. J., Peeters-Scholte, C. M. P. C. D., Poll-The, B. T., Portier, R. P., de Rijk-van Andel, J. F., Samijn, J. P. A., Schippers, H. M., Snoeck, I. N., Stroink, H., Vermeulen, R. J., Verrips, A., Visscher, F., Vles, J. S. H., Willemsen, M. A. A. P., Catsman-Berrevoets, C. E., Hintzen, R. Q., and Neuteboom, R. F.

Published
2018
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5. Predicting respiratory failure and outcome in pediatric Guillain-Barré syndrome

Author

Roodbol, Joyce, primary, Korinthenberg, Rudolf, additional, Venema, Esmee, additional, de Wit, Marie-Claire Y., additional, Lingsma, Hester F., additional, Catsman-Berrevoets, Coriene E., additional, Jacobs, Bart C., additional, Korinthenberg, R., additional, Roodbol, J., additional, de Wit, M.C.Y., additional, Catsman-Berrevoets, C.E., additional, Jacobs, B.C., additional, Engelen, M., additional, Erasmus, C.E., additional, Geleijns, C.P.W., additional, Kotsopoulos, I.A.W., additional, Nicolai, J., additional, Niermeijer, J.M.F., additional, Niks, E.H., additional, and Samijn, J., additional

Published
2023
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6. Predicting respiratory failure and outcome in pediatric Guillain-Barré syndrome

Author

Roodbol, Joyce, Korinthenberg, Rudolf, Venema, Esmee, de Wit, M. C.Y., Lingsma, Hester F., Catsman-Berrevoets, Coriene E., Jacobs, B. C., Korinthenberg, R., Catsman-Berrevoets, C. E., Engelen, M., Erasmus, C. E., Geleijns, C. P.W., Kotsopoulos, I. A.W., Nicolai, J., Niermeijer, J. M.F., Niks, E. H., Samijn, J., Roodbol, Joyce, Korinthenberg, Rudolf, Venema, Esmee, de Wit, M. C.Y., Lingsma, Hester F., Catsman-Berrevoets, Coriene E., Jacobs, B. C., Korinthenberg, R., Catsman-Berrevoets, C. E., Engelen, M., Erasmus, C. E., Geleijns, C. P.W., Kotsopoulos, I. A.W., Nicolai, J., Niermeijer, J. M.F., Niks, E. H., and Samijn, J.

Abstract

Background: Guillain-Barré syndrome (GBS) has a highly variable clinical course and outcome as indicated by the risk of developing respiratory failure and residual inability to walk. Prognostic models as Erasmus GBS Respiratory Insufficiency Score (EGRIS) developed in adult patients are inaccurate in children. Our aim was to determine the prognostic factors of respiratory failure and inability to walk in children with GBS and to develop a new clinical prognostic model for individual patients (EGRIS-Kids). Methods: A multicenter retrospective cohort study was performed using the data of children (younger than 18 years) fulfilling the diagnostic criteria for GBS from the NINDS. This study was performed in two independent cohorts from centers in Germany, Switzerland, Austria (N = 265, collected 1989–2002) and The Netherlands (N = 156, collected 1987–2016). The predicted main outcomes were occurrence of respiratory failure during the disease course and inability to walk independent at one year after diagnosis. Results: In the combined cohort of 421 children, 79 (19%) required mechanical ventilation and one patient died. The EGRIS-kids was developed including: age, cranial nerve involvement and GBS disability score at admission, resulting in a 9 point score predicting risks of respiratory failure ranging from 4 to 50% (AUC = 0.71). A lower GBS disability score at nadir was the strongest predictor of recovery to independent walking (at one month: OR 0.43 95%CI 0.25–0.74). Conclusions: EGRIS-Kids and GBS disability score at admission accurately predict the risk of respiratory failure and inability to walk respectively in children with GBS, as tools to personalize the monitoring and treatment.

Published
2023

7. Guillain-Barré syndrome following SARS-CoV-2 infection in the international GBS outcome study

Author

Luijten, L, Leonhard, S, Doets, A, van der Eijk, A, Appeltshauser, L, Arends, S, Attarian, S, Benedetti, L, Briani, C, Casasnovas, C, Castellani, F, Dardiotis, E, Echaniz-Laguna, A, Harbo, T, Humm, A, Garssen, M, Huizinga, R, Jellema, K, van der Kooi, A, Kuitwaard, K, Kuntzer, T, Kusunoki, S, Lascano, A, Martinez-Hernandez, E, Samijn, J, Rinaldi, S, Scheidegger, O, Tsouni, P, Vicino, A, Visser, L, Walgaard, C, Wang, Y, Wirtz, P, Ripellino, P, Jacobs, B, and Consortium, IGOS

Published
2022

8. Predicting Outcome in Guillain-Barré Syndrome: International Validation of the Modified Erasmus GBS Outcome Score

Author

Doets, A, Lingsma, H, Walgaard, C, Islam, B, Papri, N, Davidson, A, Yamagishi, Y, Kusunoki, S, Dimachkie, M, Waheed, W, Kolb, N, Islam, Z, Mohammad, Q, Harbo, T, Sindrup, S, Chavada, G, Willison, H, Casasnovas, C, Bateman, K, Miller, J, van den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Benedetti, L, Kuwabara, S, Van den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Péréon, Y, Bürmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Sedano Tous, M, Querol, L, Illa, I, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Lehmann, H, Granit, V, Cavaletti, G, Gutiérrez-Gutiérrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, van der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Gijsbers, C, Busby, M, Roberts, R, Silvestri, N, Fazio, R, van Dijk, G, Garssen, M, Straathof, C, Gorson, K, Jacobs, B, Doets, Alex Y, Lingsma, Hester F, Walgaard, Christa, Islam, Badrul, Papri, Nowshin, Davidson, Amy, Yamagishi, Yuko, Kusunoki, Susumu, Dimachkie, Mazen M, Waheed, Waqar, Kolb, Noah, Islam, Zhahirul, Mohammad, Quazi Deen, Harbo, Thomas, Sindrup, Soren H, Chavada, Govindsinh, Willison, Hugh J, Casasnovas, Carlos, Bateman, Kathleen, Miller, James A L, van den Berg, Bianca, Verboon, Christine, Roodbol, Joyce, Leonhard, Sonja E, Benedetti, Luana, Kuwabara, Satoshi, Van den Bergh, Peter, Monges, Soledad, Marfia, Girolama A, Shahrizaila, Nortina, Galassi, Giuliana, Péréon, Yann, Bürmann, Jan, Kuitwaard, Krista, Kleyweg, Ruud P, Marchesoni, Cintia, Sedano Tous, María J, Querol, Luis, Illa, Isabel, Wang, Yuzhong, Nobile-Orazio, Eduardo, Rinaldi, Simon, Schenone, Angelo, Pardo, Julio, Vermeij, Frederique H, Lehmann, Helmar C, Granit, Volkan, Cavaletti, Guido, Gutiérrez-Gutiérrez, Gerardo, Barroso, Fabio A, Visser, Leo H, Katzberg, Hans D, Dardiotis, Efthimios, Attarian, Shahram, van der Kooi, Anneke J, Eftimov, Filip, Wirtz, Paul W, Samijn, Johnny P A, Gilhuis, H Jacobus, Hadden, Robert D M, Holt, James K L, Sheikh, Kazim A, Karafiath, Summer, Vytopil, Michal, Antonini, Giovanni, Feasby, Thomas E, Faber, Catharina G, Gijsbers, Cees J, Busby, Mark, Roberts, Rhys C, Silvestri, Nicholas J, Fazio, Raffaella, van Dijk, Gert W, Garssen, Marcel P J, Straathof, Chiara S M, Gorson, Kenneth C, Jacobs, Bart C, Doets, A, Lingsma, H, Walgaard, C, Islam, B, Papri, N, Davidson, A, Yamagishi, Y, Kusunoki, S, Dimachkie, M, Waheed, W, Kolb, N, Islam, Z, Mohammad, Q, Harbo, T, Sindrup, S, Chavada, G, Willison, H, Casasnovas, C, Bateman, K, Miller, J, van den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Benedetti, L, Kuwabara, S, Van den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Péréon, Y, Bürmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Sedano Tous, M, Querol, L, Illa, I, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Lehmann, H, Granit, V, Cavaletti, G, Gutiérrez-Gutiérrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, van der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Gijsbers, C, Busby, M, Roberts, R, Silvestri, N, Fazio, R, van Dijk, G, Garssen, M, Straathof, C, Gorson, K, Jacobs, B, Doets, Alex Y, Lingsma, Hester F, Walgaard, Christa, Islam, Badrul, Papri, Nowshin, Davidson, Amy, Yamagishi, Yuko, Kusunoki, Susumu, Dimachkie, Mazen M, Waheed, Waqar, Kolb, Noah, Islam, Zhahirul, Mohammad, Quazi Deen, Harbo, Thomas, Sindrup, Soren H, Chavada, Govindsinh, Willison, Hugh J, Casasnovas, Carlos, Bateman, Kathleen, Miller, James A L, van den Berg, Bianca, Verboon, Christine, Roodbol, Joyce, Leonhard, Sonja E, Benedetti, Luana, Kuwabara, Satoshi, Van den Bergh, Peter, Monges, Soledad, Marfia, Girolama A, Shahrizaila, Nortina, Galassi, Giuliana, Péréon, Yann, Bürmann, Jan, Kuitwaard, Krista, Kleyweg, Ruud P, Marchesoni, Cintia, Sedano Tous, María J, Querol, Luis, Illa, Isabel, Wang, Yuzhong, Nobile-Orazio, Eduardo, Rinaldi, Simon, Schenone, Angelo, Pardo, Julio, Vermeij, Frederique H, Lehmann, Helmar C, Granit, Volkan, Cavaletti, Guido, Gutiérrez-Gutiérrez, Gerardo, Barroso, Fabio A, Visser, Leo H, Katzberg, Hans D, Dardiotis, Efthimios, Attarian, Shahram, van der Kooi, Anneke J, Eftimov, Filip, Wirtz, Paul W, Samijn, Johnny P A, Gilhuis, H Jacobus, Hadden, Robert D M, Holt, James K L, Sheikh, Kazim A, Karafiath, Summer, Vytopil, Michal, Antonini, Giovanni, Feasby, Thomas E, Faber, Catharina G, Gijsbers, Cees J, Busby, Mark, Roberts, Rhys C, Silvestri, Nicholas J, Fazio, Raffaella, van Dijk, Gert W, Garssen, Marcel P J, Straathof, Chiara S M, Gorson, Kenneth C, and Jacobs, Bart C

Abstract

Background and objectives: The clinical course and outcome of the Guillain-Barré syndrome (GBS) are diverse and vary among regions. The modified Erasmus GBS Outcome Score (mEGOS), developed with data from Dutch patients, is a clinical model that predicts the risk of walking inability in patients with GBS. The study objective was to validate the mEGOS in the International GBS Outcome Study (IGOS) cohort and to improve its performance and region specificity. Methods: We used prospective data from the first 1,500 patients included in IGOS, aged ≥6 years and unable to walk independently. We evaluated whether the mEGOS at entry and week 1 could predict the inability to walk unaided at 4 and 26 weeks in the full cohort and in regional subgroups, using 2 measures for model performance: (1) discrimination: area under the receiver operating characteristic curve (AUC) and (2) calibration: observed vs predicted probability of being unable to walk independently. To improve the model predictions, we recalibrated the model containing the overall mEGOS score, without changing the individual predictive factors. Finally, we assessed the predictive ability of the individual factors. Results: For validation of mEGOS at entry, 809 patients were eligible (Europe/North America [n = 677], Asia [n = 76], other [n = 56]), and 671 for validation of mEGOS at week 1 (Europe/North America [n = 563], Asia [n = 65], other [n = 43]). AUC values were >0.7 in all regional subgroups. In the Europe/North America subgroup, observed outcomes were worse than predicted; in Asia, observed outcomes were better than predicted. Recalibration improved model accuracy and enabled the development of a region-specific version for Europe/North America (mEGOS-Eu/NA). Similar to the original mEGOS, severe limb weakness and higher age were the predominant predictors of poor outcome in the IGOS cohort. Discussion: mEGOS is a validated tool to predict the inability to walk unaided at 4 and 26 weeks in patients with

Published
2022

9. Current treatment practice of Guillain-Barré syndrome

Author

Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, Zivkovic, S, Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., Zivkovic S. A., Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, Zivkovic, S, Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., and Zivkovic S. A.

Abstract

ObjectiveTo define the current treatment practice of Guillain-Barré syndrome (GBS).MethodsThe study was based on prospective observational data from the first 1,300 patients included in the International GBS Outcome Study. We described the treatment practice of GBS in general, and for (1) severe forms (unable to walk independently), (2) no recovery after initial treatment, (3) treatment-related fluctuations, (4) mild forms (able to walk independently), and (5) variant forms including Miller Fisher syndrome, taking patient characteristics and hospital type into account.ResultsWe excluded 88 (7%) patients because of missing data, protocol violation, or alternative diagnosis. Patients from Bangladesh (n = 189, 15%) were described separately because 83% were not treated. IV immunoglobulin (IVIg), plasma exchange (PE), or other immunotherapy was provided in 941 (92%) of the remaining 1,023 patients, including patients with severe GBS (724/743, 97%), mild GBS (126/168, 75%), Miller Fisher syndrome (53/70, 76%), and other variants (33/40, 83%). Of 235 (32%) patients who did not improve after their initial treatment, 82 (35%) received a second immune modulatory treatment. A treatment-related fluctuation was observed in 53 (5%) of 1,023 patients, of whom 36 (68%) were re-treated with IVIg or PE.ConclusionsIn current practice, patients with mild and variant forms of GBS, or with treatment-related fluctuations and treatment failures, are frequently treated, even in absence of trial data to support this choice. The variability in treatment practice can be explained in part by the lack of evidence and guidelines for effective treatment in these situations.

Published
2019

10. Guillain-Barré syndrome after SARS-CoV-2 infection in an international prospective cohort study

Author

Luijten, L, Leonhard, S, van der Eijk, A, Doets, A, Appeltshauser, L, Arends, S, Attarian, S, Benedetti, L, Briani, C, Casasnovas, C, Castellani, F, Dardiotis, E, Echaniz-Laguna, A, Garssen, M, Harbo, T, Huizinga, R, Humm, A, Jellema, K, van der Kooi, A, Kuitwaard, K, Kuntzer, T, Kusunoki, S, Lascano, A, Martinez-Hernandez, E, Rinaldi, S, Samijn, J, Scheidegger, O, Tsouni, P, Vicino, A, Visser, L, Walgaard, C, Wang, Y, Wirtz, P, Ripellino, P, Jacobs, B, Cavaletti, G, Luijten, Linda W G, Leonhard, Sonja E, van der Eijk, Annemiek A, Doets, Alex Y, Appeltshauser, Luise, Arends, Samuel, Attarian, Shahram, Benedetti, Luana, Briani, Chiara, Casasnovas, Carlos, Castellani, Francesca, Dardiotis, Efthimios, Echaniz-Laguna, Andoni, Garssen, Marcel P J, Harbo, Thomas, Huizinga, Ruth, Humm, Andrea M, Jellema, Korné, van der Kooi, Anneke J, Kuitwaard, Krista, Kuntzer, Thierry, Kusunoki, Susumu, Lascano, Agustina M, Martinez-Hernandez, Eugenia, Rinaldi, Simon, Samijn, Johnny P A, Scheidegger, Olivier, Tsouni, Pinelopi, Vicino, Alex, Visser, Leo H, Walgaard, Christa, Wang, Yuzhong, Wirtz, Paul W, Ripellino, Paolo, Jacobs, Bart C, Cavaletti, Guido, Luijten, L, Leonhard, S, van der Eijk, A, Doets, A, Appeltshauser, L, Arends, S, Attarian, S, Benedetti, L, Briani, C, Casasnovas, C, Castellani, F, Dardiotis, E, Echaniz-Laguna, A, Garssen, M, Harbo, T, Huizinga, R, Humm, A, Jellema, K, van der Kooi, A, Kuitwaard, K, Kuntzer, T, Kusunoki, S, Lascano, A, Martinez-Hernandez, E, Rinaldi, S, Samijn, J, Scheidegger, O, Tsouni, P, Vicino, A, Visser, L, Walgaard, C, Wang, Y, Wirtz, P, Ripellino, P, Jacobs, B, Cavaletti, G, Luijten, Linda W G, Leonhard, Sonja E, van der Eijk, Annemiek A, Doets, Alex Y, Appeltshauser, Luise, Arends, Samuel, Attarian, Shahram, Benedetti, Luana, Briani, Chiara, Casasnovas, Carlos, Castellani, Francesca, Dardiotis, Efthimios, Echaniz-Laguna, Andoni, Garssen, Marcel P J, Harbo, Thomas, Huizinga, Ruth, Humm, Andrea M, Jellema, Korné, van der Kooi, Anneke J, Kuitwaard, Krista, Kuntzer, Thierry, Kusunoki, Susumu, Lascano, Agustina M, Martinez-Hernandez, Eugenia, Rinaldi, Simon, Samijn, Johnny P A, Scheidegger, Olivier, Tsouni, Pinelopi, Vicino, Alex, Visser, Leo H, Walgaard, Christa, Wang, Yuzhong, Wirtz, Paul W, Ripellino, Paolo, Jacobs, Bart C, and Cavaletti, Guido

Abstract

In the wake of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, an increasing number of patients with neurological disorders, including Guillain-Barré syndrome (GBS), have been reported following this infection. It remains unclear, however, if these cases are coincidental or not, as most publications were case reports or small regional retrospective cohort studies. The International GBS Outcome Study is an ongoing prospective observational cohort study enrolling patients with GBS within 2 weeks from onset of weakness. Data from patients included in this study, between 30 January 2020 and 30 May 2020, were used to investigate clinical and laboratory signs of a preceding or concurrent SARS-CoV-2 infection and to describe the associated clinical phenotype and disease course. Patients were classified according to the SARS-CoV-2 case definitions of the European Centre for Disease Prevention and Control and laboratory recommendations of the World Health Organization. Forty-nine patients with GBS were included, of whom eight (16%) had a confirmed and three (6%) a probable SARS-CoV-2 infection. Nine of these 11 patients had no serological evidence of other recent preceding infections associated with GBS, whereas two had serological evidence of a recent Campylobacter jejuni infection. Patients with a confirmed or probable SARS-CoV-2 infection frequently had a sensorimotor variant 8/11 (73%) and facial palsy 7/11 (64%). The eight patients who underwent electrophysiological examination all had a demyelinating subtype, which was more prevalent than the other patients included in the same time window [14/30 (47%), P = 0.012] as well as historical region and age-matched control subjects included in the International GBS Outcome Study before the pandemic [23/44 (52%), P = 0.016]. The median time from the onset of infection to neurological symptoms was 16 days (interquartile range 12-22). Patients with SARS-CoV-2 infection shared uniform neurological feat

Published
2021

11. Prognostic factors for relapse and outcome in pediatric acute transverse myelitis

Author

Helfferich, Jelte, Bruijstens, Arlette L., Wong, Yu Yi M., Danielle van Pelt, E., Boon, Maartje, Neuteboom, Rinze F., Bakker, D. P., Braun, K. P.J., van Dijk, K. G.J., Eikelenboom, M. J., Engelen, M., Brandsma, R., Haaxma, C. A., Niermeijer, J. M.F., Niks, E. H., Peeters, E. A.J., Peeters-Scholte, C. M.P.C.D., Portier, R. P., de Rijk-van Andel, J. F., Samijn, J. P.A., Schippers, H. M., Sie, L. T.L., Snoeck, I. N., Vermeulen, R. J., Verrips, A., Visscher, F., Willemsen, M. A.A.P., Catsman-Berrevoets, C. E., Helfferich, Jelte, Bruijstens, Arlette L., Wong, Yu Yi M., Danielle van Pelt, E., Boon, Maartje, Neuteboom, Rinze F., Bakker, D. P., Braun, K. P.J., van Dijk, K. G.J., Eikelenboom, M. J., Engelen, M., Brandsma, R., Haaxma, C. A., Niermeijer, J. M.F., Niks, E. H., Peeters, E. A.J., Peeters-Scholte, C. M.P.C.D., Portier, R. P., de Rijk-van Andel, J. F., Samijn, J. P.A., Schippers, H. M., Sie, L. T.L., Snoeck, I. N., Vermeulen, R. J., Verrips, A., Visscher, F., Willemsen, M. A.A.P., and Catsman-Berrevoets, C. E.

Abstract

Objective: It may be difficult for clinicians to estimate the prognosis of pediatric acute transverse myelitis (ATM). The aim of this study was to define prognostic factors for relapsing disease and poor outcome in pediatric ATM. Methods: This prospective cohort study included 49 children, 18 boys and 31 girls (median age 13.1 years, IQR 6.5–16.2) with a first episode of ATM. Factors associated with relapsing disease and poor outcome (Expanded Disability Status Scale (EDSS) ≥ 4) were assessed during a median follow-up of 37 months (IQR 18–75). Results: In total, 14 patients (29%) experienced ≥ 1 relapse(s) and nine patients (18%) had a poor outcome. Factors at onset associated with relapsing disease included higher age (16.1 vs. 11.6 years, p = 0.002), longer time to maximum severity of symptoms (5.5 vs. 3 days, p = 0.01), lower maximum EDSS score (4.0 vs. 6.5, p = 0.003), short lesion on spinal MRI (64 vs. 21%, p = 0.006), abnormalities on brain MRI (93 vs. 44%, p = 0.002) and presence of oligoclonal bands in cerebrospinal fluid (67 vs. 14%, p = 0.004). The only factor associated with poor outcome was presence of a spinal cord lesion on MRI without cervical involvement (56 vs. 14%, p = 0.02). Conclusion: Pediatric ATM patients presenting with clinical, radiological and laboratory features associated with multiple sclerosis (MS) are at risk for relapsing disease. In absence of these known MS risk factors at onset of disease these patients are at low risk for relapses. Only a minority of pediatric ATM patients in this cohort have a poor outcome.

Published
2021

12. Prognostic factors for relapse and outcome in pediatric acute transverse myelitis

Author

Neurologen, Brain, Helfferich, Jelte, Bruijstens, Arlette L., Wong, Yu Yi M., Danielle van Pelt, E., Boon, Maartje, Neuteboom, Rinze F., Bakker, D. P., Braun, K. P.J., van Dijk, K. G.J., Eikelenboom, M. J., Engelen, M., Brandsma, R., Haaxma, C. A., Niermeijer, J. M.F., Niks, E. H., Peeters, E. A.J., Peeters-Scholte, C. M.P.C.D., Portier, R. P., de Rijk-van Andel, J. F., Samijn, J. P.A., Schippers, H. M., Sie, L. T.L., Snoeck, I. N., Vermeulen, R. J., Verrips, A., Visscher, F., Willemsen, M. A.A.P., Catsman-Berrevoets, C. E., Neurologen, Brain, Helfferich, Jelte, Bruijstens, Arlette L., Wong, Yu Yi M., Danielle van Pelt, E., Boon, Maartje, Neuteboom, Rinze F., Bakker, D. P., Braun, K. P.J., van Dijk, K. G.J., Eikelenboom, M. J., Engelen, M., Brandsma, R., Haaxma, C. A., Niermeijer, J. M.F., Niks, E. H., Peeters, E. A.J., Peeters-Scholte, C. M.P.C.D., Portier, R. P., de Rijk-van Andel, J. F., Samijn, J. P.A., Schippers, H. M., Sie, L. T.L., Snoeck, I. N., Vermeulen, R. J., Verrips, A., Visscher, F., Willemsen, M. A.A.P., and Catsman-Berrevoets, C. E.

Published
2021

13. Incidence of acquired demyelinating syndromes of the CNS in Dutch children: a nationwide study

Author

Ketelslegers, I. A., Catsman-Berrevoets, C. E., Neuteboom, R. F., Boon, M., van Dijk, K. G. J., Eikelenboom, M. J., Gooskens, R. H. J. M., Niks, E. H., Overweg-Plandsoen, W. C. G., Peeters, E. A. J., Peeters-Scholte, C. M. P. C. D., Poll-The, B. T., de Rijk-van Andel, J. F., Samijn, J. P. A., Snoeck, I. N., Stroink, H., Vermeulen, R. J., Verrips, A., Vles, J. S. H., Willemsen, M. A. A. P., Rodrigues Pereira, R., and Hintzen, R. Q.

Published
2012
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14. International Guillain-Barré Syndrome Outcome Study

Author

Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, Consortium, I, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Péréon, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bürmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, Jericó Pascual, I, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, Ga, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Immunology, Neurology, Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Pã©rã©on, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bã¼rmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, Jericó Pascual, I, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Rehabilitation medicine, Internal medicine, and ANS - Neuroinfection & -inflammation

Subjects
Male, Pediatrics, PROGNOSIS, diagnosis, International Cooperation, Guillain-Barré syndrome, biomarkers, outcome, prognosis, treatment, Guillain-Barre syndrome, Guillain-Barré syndrome, Neuroscience (all), Neurology (clinical), Cohort Studies, 0302 clinical medicine, Epidemiology, Outcome Assessment, Health Care, INFECTION, CRITERIA, 030212 general & internal medicine, General Neuroscience, Biobank, Observational Studies as Topic, diagnosi, Disease Progression, biomarker, Female, Settore MED/26 - Neurologia, medicine.symptom, prognosi, Cohort study, medicine.medical_specialty, Weakness, Guillain-Barre Syndrome, CLASSIFICATION, VALIDATION, 03 medical and health sciences, medicine, Humans, INTRAVENOUS IMMUNOGLOBULIN, Protocol (science), business.industry, Polyradiculoneuropathy, medicine.disease, ANTIBODIES, Observational study, business, COLLECTION, 030217 neurology & neurosurgery
Abstract

Guillain-Barré syndrome (GBS) is an acute polyradiculoneuropathy with a highly variable clinical presentation, course, and outcome. The factors that determine the clinical variation of GBS are poorly understood which complicates the care and treatment of individual patients. The protocol of the ongoing International GBS Outcome Study (IGOS), a prospective, observational, multicenter cohort study that aims to identify the clinical and biological determinants and predictors of disease onset, subtype, course and outcome of GBS is presented here. Patients fulfilling the diagnostic criteria for GBS, regardless of age, disease severity, variant forms, or treatment, can participate if included within 2 weeks after onset of weakness. Information about demography, preceding infections, clinical features, diagnostic findings, treatment, course, and outcome is collected. In addition, cerebrospinal fluid and serial blood samples for serum and DNA is collected at standard time points. The original aim was to include at least 1,000 patients with a follow-up of 1-3 years. Data are collected via a web-based data entry system and stored anonymously. IGOS started in May 2012 and by January 2017 included more than 1,400 participants from 143 active centers in 19 countries across 5 continents. The IGOS data/biobank is available for research projects conducted by expertise groups focusing on specific topics including epidemiology, diagnostic criteria, clinimetrics, electrophysiology, antecedent events, antibodies, genetics, prognostic modeling, treatment effects, and long-term outcome of GBS. The IGOS will help to standardize the international collection of data and biosamples for future research of GBS.

Published
2017

15. Current treatment practice of Guillain-Barré syndrome

Author

Verboon C., Doets A. Y., Galassi G., Davidson A., Waheed W., Pereon Y., Shahrizaila N., Kusunoki S., Lehmann H. C., Harbo T., Monges S., Van Den Bergh P., Willison H. J., Cornblath D. R., Jacobs B. C., Hughes R. A. C., Gorson K. C., Hartung H. P., Van Doorn P. A., Van den Berg B., Roodbol J., Van Woerkom M., Reisin R. C., Reddel S. W., Islam Z., Islam B., Mohammad Q. D., Feasby T. E., Dardiotis E., Nobile-Orazio E., Bateman K., Illa I., Querol L., Hsieh S. T., Chavada G., Addington J. M., Ajroud-Driss S., Andersen H., Antonini G., Ariatti A., Attarian S., Badrising U. A., Barroso F. A., Benedetti L., Beronio A., Bianco M., Binda D., Briani C., Bunschoten C., Burmann J., Bella I. R., Bertorini T. E., Bhavaraju-Sanka R., Brannagan T. H., Busby M., Butterworth S., Casasnovas C., Cavaletti G., Chao C. C., Chen S., Chetty S., Claeys K. G., Conti M. E., Cosgrove J. S., Dalakas MC., Demichelis C., Derejko M. A., Dillmann U., Dimachkie M. M., Doppler K., Dornonville de la Cour C., Echaniz-Laguna A., Eftimov F., Faber C. G., Fazio R., Fokke C., Fujioka T., Fulgenzi E. A., Garcia-Sobrino T., Garssen M. P. J., Georgios H. M., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Giorli E., Goldstein J. M., Goyal N. A., Granit V., Grapperon A., Gutierrez G., Hadden R. D. M., Holbech J. V., Holt J. K. L., Pedret C. H., Htut M., Jellema K., Pascual I. J., Jimeno-Montero M. C., Kaida K., Karafiath S., Katzberg H. D., Kiers L., Kieseier B. C., Kimpinski K., Kleyweg R. P., Kokubun N., Kolb N. A., Kuitwaard K., Kuwabara S., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V., Ledingham D., Lucy S. T., Lunn M. P. T., Magot A., Manji H., Marchesoni C., Marfia G. A., Infante C. M., Hernandez E. M., Mataluni G., Mattiazi M., McDermott C. J., Meekins G. D., Miller J. A. L., Moris de la Tassa G., Physiotherapist J. M., Nascimbene C., Nowak R. J., Balaguer P. O., Osei-Bonsu M., Pan E. B. L., Pardal A. M., Pardo J., Pasnoor M., Pulley M., Rajabally Y. A., Rinaldi S., Ritter C., Roberts R. C., Rojas-Marcos I., Rudnicki S. A., Ruiz M., Sachs G. M., Samijn J. P. A., Santoro L., Savransky A., Schenone A., Schwindling L., Tous M. J. S., Sekiguchi Y., Sheikh K. A., Silvestri N. J., Sindrup S. H., Sommer C. L., Stein B., Stino A. M., Spyropoulos A., Srinivasan J., Styliani R., Suzuki H., Tankisi H., Tigner D., Twydell P., Van Damme P., Van der Kooi A. J., Van Dijk G. W., Van der Ree T., Van Koningsveld R., Valzania F., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Vytopil M. V., Wilken M., Wilkerson C., Wirtz P. W., Yamagishi Y., Zhou L., Zivkovic S. A., Neurology, AII - Infectious diseases, AII - Inflammatory diseases, ANS - Neuroinfection & -inflammation, Immunology, Erasmus MC other, UCL - SSS/IONS/NEUR - Clinical Neuroscience, UCL - (SLuc) Service de neurologie, Verboon, C, Doets, A, Galassi, G, Davidson, A, Waheed, W, Pereon, Y, Shahrizaila, N, Kusunoki, S, Lehmann, H, Harbo, T, Monges, S, Van Den Bergh, P, Willison, H, Cornblath, D, Jacobs, B, Hughes, R, Gorson, K, Hartung, H, Van Doorn, P, Van den Berg, B, Roodbol, J, Van Woerkom, M, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, Feasby, T, Dardiotis, E, Nobile-Orazio, E, Bateman, K, Illa, I, Querol, L, Hsieh, S, Chavada, G, Addington, J, Ajroud-Driss, S, Andersen, H, Antonini, G, Ariatti, A, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bunschoten, C, Burmann, J, Bella, I, Bertorini, T, Bhavaraju-Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Conti, M, Cosgrove, J, Dalakas, M, Demichelis, C, Derejko, M, Dillmann, U, Dimachkie, M, Doppler, K, Dornonville de la Cour, C, Echaniz-Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Garcia-Sobrino, T, Garssen, M, Georgios, H, Gijsbers, C, Gilchrist, J, Gilhuis, J, Giorli, E, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutierrez, G, Hadden, R, Holbech, J, Holt, J, Pedret, C, Htut, M, Jellema, K, Pascual, I, Jimeno-Montero, M, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Ledingham, D, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Infante, C, Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Moris de la Tassa, G, Physiotherapist, J, Nascimbene, C, Nowak, R, Balaguer, P, Osei-Bonsu, M, Pan, E, Pardal, A, Pardo, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas-Marcos, I, Rudnicki, S, Ruiz, M, Sachs, G, Samijn, J, Santoro, L, Savransky, A, Schenone, A, Schwindling, L, Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Styliani, R, Suzuki, H, Tankisi, H, Tigner, D, Twydell, P, Van Damme, P, Van der Kooi, A, Van Dijk, G, Van der Ree, T, Van Koningsveld, R, Valzania, F, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Zhou, L, and Zivkovic, S

Subjects
Adult, medicine.medical_specialty, Adolescent, Patient characteristics, PLASMA-EXCHANGE, 030204 cardiovascular system & hematology, Guillain-Barre Syndrome, Settore MED/26, Severity of Illness Index, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, Severity of illness, Medicine, Effective treatment, INTRAVENOUS IMMUNOGLOBULIN, Humans, Prospective Studies, Child, Child, Preschool, Treatment Outcome, Prospective cohort study, Preschool, Guillain-Barre syndrome, business.industry, medicine.disease, RANDOMIZED-TRIAL, Prospective Studie, Hospital treatment, Treatment practice, Observational study, Neurology (clinical), business, 030217 neurology & neurosurgery, Human
Abstract

ObjectiveTo define the current treatment practice of Guillain-Barré syndrome (GBS).MethodsThe study was based on prospective observational data from the first 1,300 patients included in the International GBS Outcome Study. We described the treatment practice of GBS in general, and for (1) severe forms (unable to walk independently), (2) no recovery after initial treatment, (3) treatment-related fluctuations, (4) mild forms (able to walk independently), and (5) variant forms including Miller Fisher syndrome, taking patient characteristics and hospital type into account.ResultsWe excluded 88 (7%) patients because of missing data, protocol violation, or alternative diagnosis. Patients from Bangladesh (n = 189, 15%) were described separately because 83% were not treated. IV immunoglobulin (IVIg), plasma exchange (PE), or other immunotherapy was provided in 941 (92%) of the remaining 1,023 patients, including patients with severe GBS (724/743, 97%), mild GBS (126/168, 75%), Miller Fisher syndrome (53/70, 76%), and other variants (33/40, 83%). Of 235 (32%) patients who did not improve after their initial treatment, 82 (35%) received a second immune modulatory treatment. A treatment-related fluctuation was observed in 53 (5%) of 1,023 patients, of whom 36 (68%) were re-treated with IVIg or PE.ConclusionsIn current practice, patients with mild and variant forms of GBS, or with treatment-related fluctuations and treatment failures, are frequently treated, even in absence of trial data to support this choice. The variability in treatment practice can be explained in part by the lack of evidence and guidelines for effective treatment in these situations.

Published
2019

16. Second IVIg course in Guillain-Barré syndrome with poor prognosis. The non-randomised ISID study

Author

Verboon, C., Van Den Berg, B., Cornblath, D. R., Venema, E., Gorson, K. C., Lunn, M. P., Lingsma, H., Van Den Bergh, P., Harbo, T., Bateman, K., Pereon, Y., Sindrup, So. H., Kusunoki, S., Miller, J., Islam, Z., Hartung, H. -P., Chavada, G., Jacobs, B. C., Hughes, R. A. C., Addington, Van Doorn P. A. J. M., MD (University of Virginia, Charlottesville, USA), on October 7, S. Consortia. Protected by copyright., Downloaded from 8 Verboon C, 2019 at Uppsala Universitet BIBSAM http://jnnp. bmj. com/ J Neurol Neurosurg Psychiatry: first published as 10. 1136/jnnp-2019-321496 on 5 October 2019., J Neurol Neurosurg Psychiatry 2019, et al., 1136/jnnp-2019-321496 Neuromuscular Ajroud-Driss, 0:1–9. doi:10., MD (Northwestern University Feinberg, Chicago, USA), Antonini, G., MD (Mental Health and Sensory Organs (NESMOS), Sapienza, University, Sant’Andrea, Hospital, Rome, Italy), Attarian, S., PhD (CHU Timone, Marseille, France), Barroso, F. A., MD (Instituto de Investigaciones Neurológicas Raúl Carrea, Fleni, Buenos, Aires, Argentina), Benedetti, L., PhD (Ospedale Sant’ Andrea La Spezia, Spezia, La, Italy), Bertorini, T. E., MD (The University of Tennessee Health Science Center (UTHSC), Memphis, USA), Brannagan, T. H., MD (Columbia University, New York City, USA), Briani, C., MD (University of Padova, Padova, Italy), Bhavaraju-Sanka, R., MD (University Hospital/University of Texas Health Science Center, San Antonio Texas, Butterworth, S., MD (Pinderfields Hospital, Wakefield, UK), Casasnovas, C., Ciberer, PhD (Bellvitge University Hospital – IDIBELL Neurometabolic Diseases Group., Barcelona, Spain), Cavaletti, G., MD (University Milano-Bicocca, Monza, Italy), Chen, S., Phd, (Rutgers, Robert Wood Johnson University Hospital, New, Brunswick, Claeys, K. G., University Hospitals Leuven, PhD (1., Leuven, Belgium, KU Leuven, 2., Leuven, Belgium), Cosgrove, J. S., MD (Leeds General Infirmary, Leeds, UK), Davidson, A., MD (University of Glasgow, Glasgow, UK), Dardiotis, E., MD (University of Thessaly, Hospital of Larissa, Larissa, Greece), Dornonville de la Cour, C., MD (National Hospital Copenhagen, Copenhagen, Denmark), Faber, C. G., PhD (Maastricht University Medical Centre, Maastricht, The, Netherlands), Feasby, T. E., MD (University of Calgary, Calgary, Canada), Fujioka, T., MD (Toho University Medical Center, Tokyo, Japan), Galassi, G., MD (University Hospital of Modena, Modena, Italy), Gilchrist, J. M., MD (Soulthern Illinois University School of Medicine, Springfield, USA), Goyal, N. A., MD (University of California, Irvine, USA), Granit, V., MD (Montefiore Medical, Center, New, York, Gutiérrez-Gutiérrez, G., MD (Hospital Universitario Infanta Sofia, San, Sebastian, Spain), Hadden, R. D. M., PhD (King’s College Hospital, London, UK), Holt, J. K. L., Phd, FRCP (The Walton Centre, Liverpool, UK), Htut, M., George’s Hospital, MD (St., Jericó Pascual, I., PhD (Complejo Hospitalario de Navarra, Pamplona, Spain), Karafiath, S., MD (University of Utah School of Medicine, Salt Lake City, Katzberg, H. D., MD (University of Toronto, Toronto, Canada), Kiers, L., MD (University of Melbourne, Royal Melbourne Hospital, Parkville, Australia), Kieseier, B. C., MD (Heinrich Heine University, Düsseldorf, Germany), Kimpinski, K., MD (University Hospital, Lhsc, London-Ontario, Canada), Kuwabara, S., PhD (Chiba University, Chiba, Japan), Kwan, J. Y., MD (University of Maryland School of Medicine, Baltimore, USA), Ladha, S. S., MD (Barrow Neurology Clinics, Phoenix, Arizona, Lawson, V., MD (Wexner Medical Center at The Ohio State University, Columbus, USA), Lehmann, H., PhD (University Hospital of Cologne, Universitätsklinikum, Köln, Cologne, Germany), Manji, H., FRCP (Ipswich Hospital, Ipswich, UK), Marfia, G. A., MD (Neurological Clinic, Policlinico Tor Vergata, Márquez Infante, C., MD (Hospital Universitario Virgen del Rocio, Seville, Spain), Mattiazzi, M. G., MD (Hospital Militar Central, Mcdermott, C. J., MD (Royal Hallamshire Hospital, Nihr, Clinical, Sheffield, UK), Monges, M. S., Garrahan, MD (Hospital de Pediatría J. P., Morís de la Tassa, G., MD (Hospital Universitario Central de Asturias, Asturias, Spain), Nascimbene, C., PhD (Luigi Sacco Hospital, Milan, Italy), Nobile Orazio, E., PhD (Milan University, Humanitas Clinicala and Research Institute Milan, Nowak, R. J., MD (Yale University School of Medicine, New, Haven, Osei-Bonsu (James Cook University Hospital, M., Middlesbrough, UK), Pardo Fernandez (Hospital Clínico de Santiago, J., Santiago de Compostela (A Coruña), Querol Gutierrez, L., PhD (Hospital de la Santa Creu, i Sant Pau, Universitat Autònoma de Barcelona, Reisin (Hospital Britanico, R., Rinaldi, S., Mbchb, Roberts, PhD (University of Oxford R. C., MD (Addenbrooke’s Hospital Cambridge, Cambridge, UK), Rojas-Marcos, I., MD (Hospital Univesitario Reina Sofia, Cordoba, Spain), Rudnicki, S. A., MD (University of Arkansas, Fayetteville, USA), Schenone, A., Department of Neurosciences, PhD (1., Rehabilitation, Ophthalmology, Genetics and Maternal and Infantile Sciences (DINOGMI), University of Genova, Genova, IRCCS Policlinico San Martino, Italy 2., Genova, Italy), Sedano Tous, M. J., MD (Hospital Universitario Marques de Valdecilla, Santander, Cantabria, Shahrizaila, N., MD (Neurology Unit, Department of Medicine, Faculty of Medicine, University of Malaya, Malaya), Sheikh, K., PhD (The University of Texas Health Science Center at Houston, Houston, USA), Silvestri, N. J., MD (Buffalo General Medical Center, Buffalo, Ny, Sommer, C. L., MD (Universitätsklinikum Würzburg, Würzburg, Germany), Varrato, J. D., DO (Lehigh Valley Health Network, Allentown, USA), Verschuuren, J., PhD (Leiden University Medical Centre, Leiden, Vytopil, M. V., Waheed, PhD (Tufts University School of Medicine Lahey Hospital W., MD (University of Vermont Medical Center, Burlington, USA), Zhou, L., PhD (Icahn School of Medicine at Mount Sinai, Badrising, USA). Other collaborators were:U. A., Bella, I. R., MD (University of Mass Medical School, Worcester, USA), Bunschoten, C., PhD candidate (Erasmus University Medical Centre, Rotterdam, Bürmann, J., Universitätsklinikum des Saarlandes, Homburg, Germany), Busby, M., Bradford, UK), Chao, C. C., PhD (National Taiwan University Hospital, Taipei, Taiwan), Conti, M. E., MD (University Hospital Clinicas, Dalakas, M. C., Thomas Jefferson University, MD (1., Philadelphia, Usa, National and Kapodistrian University of Athens, 2., Athens, Greece), Van Damme, P., PhD (University Hospital Leuven, Doets, A., van Dijk, G. W., MD (Canisius Wilhelmina Hospital, Nijmegen, Dimachkie, M. M., MD (University of Kansas Medical Center, Kansas, City, Doppler, K., Echaniz-Laguna, A., MD (Hopital de Hautepierre, Strasbourgh, France), Eftimov, F., PhD (Amsterdam University Medical Centre, Amsterdam, Fazio, R., MD (Scientific Institute San Raffaele, Fokke, C., MD (Gelre Hospital, Zutphen and Apeldoorn, Fulgenzi, E. A., MD (Hospital Cesar Milstein Buenos Aires, Garssen, M. P. J., PhD (Jeroen Bosch Hospital, Hertogenbosch, ’S, Zaltbommel and Drunen, Gijsbers, C. J., MD (Vlietland Hospital, Schiedam, Gilhuis, J., PhD (Reinier de Graaf Gasthuis, Delft, Grapperon, A., MD (CHU Timone, Hsieh, S. T., Illa, I., Islam, B., PhD (International Centre for Diarrhoeal Disease Research, Bangladesh, (icddr, Dhaka, b), Bangladesh), Jellema, K., PhD (Haaglanden Medisch Centrum, The, Hague, Kaida, K., PhD (National Defense Medical College, Saitama, Japan), Kokubun, N., MD (Dokkyo Medical University, Tochigi, Japan), Kolb, N., MD (University of Vermont, Burlington, Vt, van Koningsveld, R., PhD (Elkerliek Hospital, Helmond and Deurne, van der Kooi, A. J., Kuitwaard, K., PhD (Albert Schweitzer Hospital, Dordrecht, Landschoff Lassen, L., MD (Glostrup Hospital, Glostrup, Denmark), Leonhard, S. E., Mandarakas, M., PhD (Erasmus University Medical Centre, Martinez Hernandez, E., MD (Institut d’Investigacions Biomèdiques August Pi, i Sunyer (IDIBAPS), Hospital, Clinic, Mohammad, Q. D., PhD (National Institute of Neurosciences and Hospital, Dhaka, Bangladesh), Pulley, M., MD (University of Florida, Jacksonville, USA), Rajabally, Y. A., PhD (Queen Elizabeth Hospital, Birmingham, UK), Reddel, S. W., PhD (Concord Repatriation General Hospital, Sydney, Australia), van der Ree, T., (Westfriesgasthuis, Md, Hoorn, Roodbol, J., Sachs, G. M., MD (University of Rhode Island, Providence, USA), Samijn, J. P. A., PhD (Maasstad Hospital, Santoro, L., PhD (University Federico II, Napels, Italy), Stein, B., Joseph’s Regional Medical Center, MD (St., Paterson, USA), Vermeij, F. H., MD (Franciscus Gasthuis, Visser, L. H., PhD (Elisabeth-TweeSteden Hospital, Tilburg and Waalwijk, Willison, H. J., PhD (University of Glasgow, Wirtz, P., Phd, (HagaZiekenhuis, Zivkovich, S. A., PhD (University of Pittsburgh Medical Center, and Pittsburgh, USA).

Subjects
treatment, disability evaluation, drug administration schedule, adult, guillain-barré syndrome, poor prognosis, second ivig course, aged, female, guillain-barre syndrome, humans, immunoglobulin g, immunoglobulins, intravenous, immunologic factors, male, middle aged, prognosis, time factors, treatment outcome
Published
2020

17. Second IVIg course in Guillain-Barre syndrome patients with poor prognosis (SID-GBS trial): Protocol for a double-blind randomized, placebo-controlled clinical trial

Author

Walgaard, Christa, Jacobs, Bart C., Lingsma, Hester F., Steyerberg, Ewout W., Cornblath, David R., van Doorn, Pieter A., de Wit, M. C. Y., van den Berg, B., Doets, A. Y., Leonhard, S. E., Verboon, J. C., van Woerkom, M., Tio-Gillen, A. P., van Rijs, W., Huizinga, H., Badrising, U. A., Bienfait, H. M. E., Blom, R. J., van Boheemen, C. J. M., Breukelman, A. J., Bronner, I. M., Dieks, H. J. G., van Dijk, G. W., van Engelen, B. G. M., Faber, C. G., Feenstra, B., Fokke, C., Garssen, M. P. J., Gijsbers, C. J., Gilhuis, H. J., van der Graaff, M. M., Groen, R. J., Hoogendoorn, T. A., Hovestad, A., Jansen, P. J. H. W., Jellema, K., Keuter, E., Kleyweg, R. P., van Koningsveld, R., van der Kooi, A. J., van der Kooi, E. L., Krudde, J., Kuks, J. B. M., Kuitwaard, K., Linssen, W. H. J. P., Lion, J., Lovenich, H., Manschot, S. M., Mellema, S. J., Merkies, I. S. J., van der Meulen, M. F. G., van der Meulen, W. D. M., Molenaar, D. S. M., Oenema, D. G., van Oosten, B. W., van Oostrom, J. C. H., van Orshoven, N. P., van der Ploeg, R. J. O., van der Pol, W. L., Polman, S., van der Ree, T. C., de Rijk, M. C., Ruitenberg, A., Ruts, L., Samijn, J. P. A., Schyns-Soeterboek, A. J. G. M., Stevens, M., Vermeij, F. H., Verschuuren, J. J. G. M., Visser, L. H., Wirtz, P. W., Wohlgemuth, M., Zwetsloot, C. P., Dippel, D. W. J., Hintzen, R. Q., Anesthesiology, Neurology, Amsterdam Neuroscience - Neuroinfection & -inflammation, AII - Infectious diseases, ANS - Neuroinfection & -inflammation, Immunology, and Public Health

Subjects
Male, IVIg, Disease, Guillain-Barre syndrome, Disability Evaluation, 0302 clinical medicine, hemic and lymphatic diseases, 030212 general & internal medicine, Hospital Mortality, Netherlands, Randomized Controlled Trials as Topic, treatment, General Neuroscience, Standard treatment, Immunoglobulins, Intravenous, Middle Aged, trial, Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3], Prognosis, Intensive Care Units, Treatment Outcome, Research Design, Female, Adult, medicine.medical_specialty, Poor prognosis, Randomization, Adolescent, Placebo, 03 medical and health sciences, Young Adult, All institutes and research themes of the Radboud University Medical Center, Double-Blind Method, Internal medicine, medicine, Humans, Muscle Strength, protocol, Adverse effect, Aged, business.industry, Patient Selection, Recovery of Function, Length of Stay, medicine.disease, Respiration, Artificial, Clinical trial, Immunoglobulin G, Neurology (clinical), business, 030217 neurology & neurosurgery
Abstract

One course of intravenous immunoglobulins (IVIg) of 2 g/kg is standard treatment in Guillain-Barré syndrome (GBS) patients unable to walk independently. Despite treatment some patients recover poorly, in part related to rapid consumption of IVIg, indicating that they may benefit from a second course of IVIg. The aim of the study is to determine whether a second course of IVIg, administered 1 week after start of the first course in patients with GBS and predicted poor outcome improves functional outcome on the GBS disability scale after 4 weeks. Secondary outcome measures include adverse events (AEs), Medical Research Council sumscore and GBS disability score after 8, 12, and 26 weeks, length of hospital and ICU admission, mortality, and changes in serum IgG levels. GBS patients of 12 years and older with a poor prognosis, based on the modified Erasmus GBS outcome score (mEGOS) at 1 week after start of the first IVIg course are eligible for randomization in this double-blind, placebo-controlled (IVIg or albumin) clinical trial. This study will determine if a second course of IVIg administered in the acute phase of the disease is safe, feasible, and effective in patients with GBS and a poor prognosis. This Dutch trial is registered prospectively as NTR 2224 in the Netherlands National Trial Register (NTR) which is the Primary Registry in the WHO Registry Network for the Netherlands.

Published
2018

21. International Guillain-Barré Syndrome Outcome Study: protocol of a prospective observational cohort study on clinical and biological predictors of disease course and outcome in Guillain-Barré syndrome

Author

Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Pã©rã©on, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bã1⁄4rmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, JericÃ3 Pascual, I, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Zivkovic, S., BINDA, DAVIDE, CAVALETTI, GUIDO ANGELO, Jacobs, B, van den Berg, B, Verboon, C, Chavada, G, Cornblath, D, Gorson, K, Harbo, T, Hartung, H, Hughes, R, Kusunoki, S, van Doorn, P, Willison, H, van Woerkom, M, Roodbol, J, Reisin, R, Reddel, S, Islam, Z, Islam, B, Mohammad, Q, van den Bergh, P, Feasby, T, Wang, Y, Pã©rã©on, Y, Lehmann, H, Dardiotis, E, Nobile Orazio, E, Shahrizaila, N, Bateman, K, Illa, I, Querol, L, Hsieh, S, Davidson, A, Addington, J, Ajroud Driss, S, Andersen, H, Antonini, G, Attarian, S, Badrising, U, Barroso, F, Benedetti, L, Beronio, A, Bianco, M, Binda, D, Briani, C, Bã1⁄4rmann, J, Bella, I, Bertorini, T, Bhavaraju Sanka, R, Brannagan, T, Busby, M, Butterworth, S, Campagnolo, M, Casasnovas, C, Cavaletti, G, Chao, C, Chen, S, Chetty, S, Claeys, K, Cohen, J, Conti, M, Cosgrove, J, Dalakas, M, Dimachkie, M, Dillmann, U, Domínguez González, C, Doppler, K, Dornonville de la Cour, C, Echaniz Laguna, A, Eftimov, F, Faber, C, Fazio, R, Fokke, C, Fujioka, T, Fulgenzi, E, Galassi, G, Garcia, T, Garnero, M, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, H, Goldstein, J, Goyal, N, Granit, V, Grapperon, A, Gutiérrez Gutiérrez, G, Gutmann, L, Hadden, R, Holbech, J, Holt, J, Homedes Pedret, C, Htut, M, Jellema, K, JericÃ3 Pascual, I, Kaida, K, Karafiath, S, Katzberg, H, Kiers, L, Kieseier, B, Kimpinski, K, Kleyweg, R, Kokubun, N, Kolb, N, Kuitwaard, K, Kuwabara, S, Kwan, J, Ladha, S, Landschoff Lassen, L, Lawson, V, Ledingham, D, Léon Cejas, L, Luciano, C, Lucy, S, Lunn, M, Magot, A, Manji, H, Marchesoni, C, Marfia, G, Márquez Infante, C, Martinez Hernandez, E, Mataluni, G, Mattiazi, M, Mcdermott, C, Meekins, G, Miller, J, Monges, M, Montero, M, Morís de la Tassa, G, Nascimbene, C, Neumann, C, Nowak, R, Orizaola Balaguer, P, Osei Bonsu, M, Pan, E, Pardo Fernandez, J, Pasnoor, M, Pulley, M, Rajabally, Y, Rinaldi, S, Ritter, C, Roberts, R, Rojas Marcos, I, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Saperstein, D, Savransky, A, Schneider, H, Schenone, A, Sedano Tous, M, Sekiguchi, Y, Sheikh, K, Silvestri, N, Sindrup, S, Sommer, C, Stein, B, Stino, A, Spyropoulos, A, Srinivasan, J, Suzuki, H, Taylor, S, Tankisi, H, Tigner, D, Twydell, P, Valzania, F, van Damme, P, van der Kooi, A, van Dijk, G, van der Ree, T, van Koningsveld, R, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Vytopil, M, Waheed, W, Wilken, M, Wilkerson, C, Wirtz, P, Yamagishi, Y, Yiu, E, Zhou, L, Zivkovic, S, Zivkovic, S., BINDA, DAVIDE, and CAVALETTI, GUIDO ANGELO

Abstract

Guillain-Barré syndrome (GBS) is an acute polyradiculoneuropathy with a highly variable clinical presentation, course, and outcome. The factors that determine the clinical variation of GBS are poorly understood which complicates the care and treatment of individual patients. The protocol of the ongoing International GBS Outcome Study (IGOS), a prospective, observational, multicenter cohort study that aims to identify the clinical and biological determinants and predictors of disease onset, subtype, course and outcome of GBS is presented here. Patients fulfilling the diagnostic criteria for GBS, regardless of age, disease severity, variant forms, or treatment, can participate if included within 2 weeks after onset of weakness. Information about demography, preceding infections, clinical features, diagnostic findings, treatment, course, and outcome is collected. In addition, cerebrospinal fluid and serial blood samples for serum and DNA is collected at standard time points. The original aim was to include at least 1,000 patients with a follow-up of 1–3 years. Data are collected via a web-based data entry system and stored anonymously. IGOS started in May 2012 and by January 2017 included more than 1,400 participants from 143 active centers in 19 countries across 5 continents. The IGOS data/biobank is available for research projects conducted by expertise groups focusing on specific topics including epidemiology, diagnostic criteria, clinimetrics, electrophysiology, antecedent events, antibodies, genetics, prognostic modeling, treatment effects, and long-term outcome of GBS. The IGOS will help to standardize the international collection of data and biosamples for future research of GBS.

Published
2017

24. Hematopoietic stem cell transplantation for multiple sclerosis. A retrospective multicenter study

Author

Fassas, A., Passweg, J. R., Anagnostopoulos, A., Kazis, A., Kozak, T., Havrdova, E., Carreras, E., Graus, F., Kashyap, A., Openshaw, H., Schipperus, M., Deconinck, E., Mancardi, GIOVANNI LUIGI, Marmont, A., Hansz, J., Rabusin, M., Zuazu, F. J., Besalduch, J., Dentamaro, T., Fouillard, L., Hertenstein, B., Nasa, G. L., Musso, M., Papineschi, F., Rowe, J. M., Saccardi, R., Steck, A., Kappos, L., Gratwohl, A., Tyndall, A., Samijn, J., Samign, J., Working, A. D., and Transplantation), M.

Subjects
Adult, Male, immunology/mortality/therapy, Multiple Sclerosis, Transplantation Conditioning, Hematopoietic Stem Cell Transplantation, Middle Aged, Adult, Bone Marrow Transplantation, adverse effects/mortality, CD4 Lymphocyte Count, Disease Progression, Disease-Free Survival, Female, Hematopoietic Stem Cell Mobilization, adverse effects, Hematopoietic Stem Cell Transplantation, adverse effects/mortality, Humans, Male, Middle Aged, Multiple Sclerosis, Chronic Progressive, immunology/mortality/therapy, Retrospective Studies, Transplantation Conditioning, adverse effects, Treatment Outcome, Disease-Free Survival, Hematopoietic Stem Cell Mobilization, CD4 Lymphocyte Count, adverse effects/mortality, Treatment Outcome, Disease Progression, adverse effects, Humans, Female, Bone Marrow Transplantation, Retrospective Studies
Published
2002

25. Drug adherence and multidisciplinary care in patients with multiple sclerosis: protocol of a prospective, web-based, patient-centred, nation-wide, Dutch cohort study in glatiramer acetate treated patients (CAIR study).

Author

Jongen, P.J.H., Hengstman, G.J.D., Hupperts, R., Schrijver, H., Gilhuis, J., Vliegen, J.H., Hoogervorst, E., Huizen, M. van, Munster, E. van, Samijn, J., Schryver, E. de, Siepman, T., Tonk, M., Zandbergen, E., Holter, J. ten, Kruijk, R. van der, Borm, G.F., Jongen, P.J.H., Hengstman, G.J.D., Hupperts, R., Schrijver, H., Gilhuis, J., Vliegen, J.H., Hoogervorst, E., Huizen, M. van, Munster, E. van, Samijn, J., Schryver, E. de, Siepman, T., Tonk, M., Zandbergen, E., Holter, J. ten, Kruijk, R. van der, and Borm, G.F.

Abstract

Contains fulltext : 97839.pdf (publisher's version ) (Open Access), BACKGROUND: Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system, for which no definitive treatment is available. Most patients start with a relapsing-remitting course (RRMS). Disease-modifying drugs (DMDs) reduce relapses and disability progression. First line DMDs include glatiramer acetate (GA), interferon-beta (INFb)-1a and INFb-1b, which are all administered via injections. Effectiveness of DMD treatment depends on adequate adherence, meaning year-long continuation of injections with a minimum of missed doses. In real-life practice DMD-treated patients miss 30% of doses. The 6-month discontinuation rate is up to 27% and most patients who discontinue do so in the first 12 months.Treatment adherence is influenced by the socio-economic situation, health care and caregivers, disease, treatment and patient characteristics. Only a few studies have dealt with adherence-related factors in DMD-treated patients. Self-efficacy expectations were found to be related to GA adherence. Patient education and optimal support improve adherence in general. Knowledge of the aspects of care that significantly relate to adherence could lead to adherence-improving measures. Moreover, identification of patients at risk of inadequate adherence could lead to more efficient care.In the near future new drugs will become available for RRMS. Detailed knowledge on factors prognostic of adherence and on care aspects that are associated with adequate adherence will improve the chances of these drugs becoming effective treatments. We investigate in RRMS patients the relationship between drug adherence and multidisciplinary care, as well as factors associated with adherence. Given the differences in the frequency of administration and in the side effects between the DMDs we decided to study patients treated with the same DMD, GA. METHODS/DESIGN: The Correlative analyses of Adherence In Relapsing remitting MS (CAIR) study is an investigator-initiate

Published
2011

30. Predicting Outcome in Guillain-Barre Syndrome International Validation of the Modified Erasmus GBS Outcome Score

Author

Doets, A.Y., Lingsma, H.F., Walgaard, C., Islam, B., Papri, N., Davidson, A., Yamagishi, Y., Kusunoki, S., Dimachkie, M.M., Waheed, W., Kolb, N., Islam, Z., Mohammad, Q.D., Harbo, T., Sindrup, S.H., Chavada, G., Willison, H.J., Casasnovas, C., Bateman, K., Miller, J.A.L., Berg, B. van den, Verboon, C., Roodbol, J., Leonhard, S.E., Benedetti, L., Kuwabara, S., Bergh, P. van den, Monges, S., Marfia, G.A., Shahrizaila, N., Galassi, G., Pereon, Y., Burmann, J., Kuitwaard, K., Kleyweg, R.P., Marchesoni, C., Tous, M.J.S., Querol, L., Illa, I., Wang, Y.Z., Nobile-Orazio, E., Rinaldi, S., Schenone, A., Pardo, J., Vermeij, F.H., Lehmann, H.C., Granit, V., Cavaletti, G., Gutierrez-Gutierrez, G., Barroso, F.A., Visser, L.H., Katzberg, H.D., Dardiotis, E., Attarian, S., Kooi, A.J. van der, Eftimov, F., Wirtz, P.W., Samijn, J.P.A., Gilhuis, H.J., Hadden, R.D.M., Holt, J.K.L., Sheikh, K.A., Karafiath, S., Vytopil, M., Antonini, G., Feasby, T.E., Faber, C.G., Gijsbers, C.J., Busby, M., Roberts, R.C., Silvestri, N.J., Fazio, R., Dijk, G.W. van, Garssen, M.P.J., Straathof, C.S.M., Gorson, K.C., Jacobs, B.C., IGOS Consortium, Neurology, ANS - Neuroinfection & -inflammation, EURO-NMD, Klinische Neurowetenschappen, MUMC+: MA Med Staf Spec Neurologie (9), RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, Doets, A, Lingsma, H, Walgaard, C, Islam, B, Papri, N, Davidson, A, Yamagishi, Y, Kusunoki, S, Dimachkie, M, Waheed, W, Kolb, N, Islam, Z, Mohammad, Q, Harbo, T, Sindrup, S, Chavada, G, Willison, H, Casasnovas, C, Bateman, K, Miller, J, van den Berg, B, Verboon, C, Roodbol, J, Leonhard, S, Benedetti, L, Kuwabara, S, Van den Bergh, P, Monges, S, Marfia, G, Shahrizaila, N, Galassi, G, Péréon, Y, Bürmann, J, Kuitwaard, K, Kleyweg, R, Marchesoni, C, Sedano Tous, M, Querol, L, Illa, I, Wang, Y, Nobile-Orazio, E, Rinaldi, S, Schenone, A, Pardo, J, Vermeij, F, Lehmann, H, Granit, V, Cavaletti, G, Gutiérrez-Gutiérrez, G, Barroso, F, Visser, L, Katzberg, H, Dardiotis, E, Attarian, S, van der Kooi, A, Eftimov, F, Wirtz, P, Samijn, J, Gilhuis, H, Hadden, R, Holt, J, Sheikh, K, Karafiath, S, Vytopil, M, Antonini, G, Feasby, T, Faber, C, Gijsbers, C, Busby, M, Roberts, R, Silvestri, N, Fazio, R, van Dijk, G, Garssen, M, Straathof, C, Gorson, K, Jacobs, B, Public Health, and Immunology

Subjects
Guillain-Barrè, predicting, outcome, IGOS, MODELS, Guillain-Barre Syndrome, Prognosis, Settore MED/26, Cohort Studies, POOR-PROGNOSIS, Outcome Assessment, Health Care, Humans, INTRAVENOUS IMMUNOGLOBULIN, Neurology (clinical), Prospective Studies, Child, Research Article
Abstract

Background and ObjectivesThe clinical course and outcome of the Guillain-Barré syndrome (GBS) are diverse and vary among regions. The modified Erasmus GBS Outcome Score (mEGOS), developed with data from Dutch patients, is a clinical model that predicts the risk of walking inability in patients with GBS. The study objective was to validate the mEGOS in the International GBS Outcome Study (IGOS) cohort and to improve its performance and region specificity.MethodsWe used prospective data from the first 1,500 patients included in IGOS, aged ≥6 years and unable to walk independently. We evaluated whether the mEGOS at entry and week 1 could predict the inability to walk unaided at 4 and 26 weeks in the full cohort and in regional subgroups, using 2 measures for model performance: (1) discrimination: area under the receiver operating characteristic curve (AUC) and (2) calibration: observed vs predicted probability of being unable to walk independently. To improve the model predictions, we recalibrated the model containing the overall mEGOS score, without changing the individual predictive factors. Finally, we assessed the predictive ability of the individual factors.ResultsFor validation of mEGOS at entry, 809 patients were eligible (Europe/North America [n = 677], Asia [n = 76], other [n = 56]), and 671 for validation of mEGOS at week 1 (Europe/North America [n = 563], Asia [n = 65], other [n = 43]). AUC values were >0.7 in all regional subgroups. In the Europe/North America subgroup, observed outcomes were worse than predicted; in Asia, observed outcomes were better than predicted. Recalibration improved model accuracy and enabled the development of a region-specific version for Europe/North America (mEGOS-Eu/NA). Similar to the original mEGOS, severe limb weakness and higher age were the predominant predictors of poor outcome in the IGOS cohort.DiscussionmEGOS is a validated tool to predict the inability to walk unaided at 4 and 26 weeks in patients with GBS, also in countries outside the Netherlands. We developed a region-specific version of mEGOS for patients from Europe/North America.Classification of EvidenceThis study provides Class II evidence that the mEGOS accurately predicts the inability to walk unaided at 4 and 26 weeks in patients with GBS.Trial Registration InformationNCT01582763.

Published
2022

31. Guillain-Barré syndrome after SARS-CoV-2 infection in an international prospective cohort study

Author

Luijten, LWG, Leonhard, SE, van der Eijk, AA, Doets, AY, Appeltshauser, L, Arends, S, Attarian, S, Benedetti, L, Briani, C, Casasnovas, C, Castellani, F, Dardiotis, E, Echaniz-Laguna, A, Garssen, MPJ, Harbo, T, Huizinga, R, Humm, AM, Jellema, K, van der Kooi, AJ, Kuitwaard, K, Kuntzer, T, Kusunoki, S, Lascano, AM, Martinez-Hernandez, E, Rinaldi, S, Samijn, JPA, Scheidegger, O, Tsouni, P, Vicino, A, Visser, LH, Walgaard, C, Wang, YZ, Wirtz, PW, Ripellino, P, Jacobs, BC, Martín-Aguilar L, Zivkovic, Sasa A., Neurology, Virology, Immunology, Luijten, L, Leonhard, S, van der Eijk, A, Doets, A, Appeltshauser, L, Arends, S, Attarian, S, Benedetti, L, Briani, C, Casasnovas, C, Castellani, F, Dardiotis, E, Echaniz-Laguna, A, Garssen, M, Harbo, T, Huizinga, R, Humm, A, Jellema, K, van der Kooi, A, Kuitwaard, K, Kuntzer, T, Kusunoki, S, Lascano, A, Martinez-Hernandez, E, Rinaldi, S, Samijn, J, Scheidegger, O, Tsouni, P, Vicino, A, Visser, L, Walgaard, C, Wang, Y, Wirtz, P, Ripellino, P, Jacobs, B, Cavaletti, G, AII - Infectious diseases, ANS - Neuroinfection & -inflammation, and EURO-NMD

Subjects
Adult, Male, Pediatrics, medicine.medical_specialty, Autoimmune diseases, Guillain-Barre Syndrome/epidemiology, 610 Medicine & health, Comorbidity, Guillain-Barre syndrome, Settore MED/26, Cohort Studies, Campylobacter Jejuni Infection, Comorbiditat, Interquartile range, preceding infection, Pandemic, medicine, Humans, Prospective Studies, Prospective cohort study, Aged, Malalties autoimmunitàries, AcademicSubjects/SCI01870, business.industry, SARS-CoV-2, COVID-19, Retrospective cohort study, Original Articles, Guillain-Barré, Middle Aged, clinical phenotype, medicine.disease, syndrome, preceding infections, COVID-19/complications, Population study, AcademicSubjects/MED00310, Female, Neurology (clinical), business, Cohort study
Abstract

In the wake of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, an increasing number of patients with neurological disorders, including Guillain-Barré syndrome (GBS), have been reported following this infection. It remains unclear, however, if these cases are coincidental or not, as most publications were case reports or small regional retrospective cohort studies. The International GBS Outcome Study is an ongoing prospective observational cohort study enrolling patients with GBS within 2 weeks from onset of weakness. Data from patients included in this study, between 30 January 2020 and 30 May 2020, were used to investigate clinical and laboratory signs of a preceding or concurrent SARS-CoV-2 infection and to describe the associated clinical phenotype and disease course. Patients were classified according to the SARS-CoV-2 case definitions of the European Centre for Disease Prevention and Control and laboratory recommendations of the World Health Organization. Forty-nine patients with GBS were included, of whom eight (16%) had a confirmed and three (6%) a probable SARS-CoV-2 infection. Nine of these 11 patients had no serological evidence of other recent preceding infections associated with GBS, whereas two had serological evidence of a recent Campylobacter jejuni infection. Patients with a confirmed or probable SARS-CoV-2 infection frequently had a sensorimotor variant 8/11 (73%) and facial palsy 7/11 (64%). The eight patients who underwent electrophysiological examination all had a demyelinating subtype, which was more prevalent than the other patients included in the same time window [14/30 (47%), P = 0.012] as well as historical region and age-matched control subjects included in the International GBS Outcome Study before the pandemic [23/44 (52%), P = 0.016]. The median time from the onset of infection to neurological symptoms was 16 days (interquartile range 12–22). Patients with SARS-CoV-2 infection shared uniform neurological features, similar to those previously described in other post-viral GBS patients. The frequency (22%) of a preceding SARS-CoV-2 infection in our study population was higher than estimates of the contemporaneous background prevalence of SARS-CoV-2, which may be a result of recruitment bias during the pandemic, but could also indicate that GBS may rarely follow a recent SARS-CoV-2 infection. Consistent with previous studies, we found no increase in patient recruitment during the pandemic for our ongoing International GBS Outcome Study compared to previous years, making a strong relationship of GBS with SARS-CoV-2 unlikely. A case-control study is required to determine if there is a causative link or not., Luijten et al. report that patients with Guillain-Barré syndrome (GBS) after SARS-CoV-2 infection share uniform neurological features, similar to those previously described in other cases of post-viral GBS. They conclude that SARS-CoV-2 infection may be an occasional trigger for GBS, but that a strong association is unlikely.

Published
2021

32. Cervical dysplasia associated with the use of natalizumab.

Author

Rolfes L, Lokhorst B, Samijn J, and van Puijenbroek E

Subjects
Adult, Antibodies, Monoclonal, Humanized therapeutic use, Female, Humans, Multiple Sclerosis drug therapy, Natalizumab, Papillomaviridae, Uterine Cervical Dysplasia virology, Antibodies, Monoclonal, Humanized adverse effects, Tumor Virus Infections etiology, Uterine Cervical Dysplasia etiology
Published
2013

33. Drug adherence and multidisciplinary care in patients with multiple sclerosis: protocol of a prospective, web-based, patient-centred, nation-wide, Dutch cohort study in glatiramer acetate treated patients (CAIR study).

Author

Jongen PJ, Hengstman G, Hupperts R, Schrijver H, Gilhuis J, Vliegen JH, Hoogervorst E, van Huizen M, van Munster E, Samijn J, de Schryver E, Siepman T, Tonk M, Zandbergen E, ten Holter J, van der Kruijk R, and Borm G

Subjects
Cohort Studies, Glatiramer Acetate, Humans, Netherlands, Prospective Studies, Immunosuppressive Agents therapeutic use, Internet, Medication Adherence statistics & numerical data, Multiple Sclerosis drug therapy, Peptides therapeutic use, Research Design
Abstract

Background: Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system, for which no definitive treatment is available. Most patients start with a relapsing-remitting course (RRMS). Disease-modifying drugs (DMDs) reduce relapses and disability progression. First line DMDs include glatiramer acetate (GA), interferon-beta (INFb)-1a and INFb-1b, which are all administered via injections. Effectiveness of DMD treatment depends on adequate adherence, meaning year-long continuation of injections with a minimum of missed doses. In real-life practice DMD-treated patients miss 30% of doses. The 6-month discontinuation rate is up to 27% and most patients who discontinue do so in the first 12 months.Treatment adherence is influenced by the socio-economic situation, health care and caregivers, disease, treatment and patient characteristics. Only a few studies have dealt with adherence-related factors in DMD-treated patients. Self-efficacy expectations were found to be related to GA adherence. Patient education and optimal support improve adherence in general. Knowledge of the aspects of care that significantly relate to adherence could lead to adherence-improving measures. Moreover, identification of patients at risk of inadequate adherence could lead to more efficient care.In the near future new drugs will become available for RRMS. Detailed knowledge on factors prognostic of adherence and on care aspects that are associated with adequate adherence will improve the chances of these drugs becoming effective treatments. We investigate in RRMS patients the relationship between drug adherence and multidisciplinary care, as well as factors associated with adherence. Given the differences in the frequency of administration and in the side effects between the DMDs we decided to study patients treated with the same DMD, GA., Methods/design: The Correlative analyses of Adherence In Relapsing remitting MS (CAIR) study is an investigator-initiated, prospective, web-based, patient-centred, nation-wide cohort study in the Netherlands.The primary objective is to investigate whether GA adherence is associated with specific disciplines of care or quantities of specific care. The secondary objective is to investigate whether GA adherence is associated with specific aspects of the socio-economic situation, health care and caregivers, disease, treatment or patient characteristics.All data are acquired on-line via a study website. All RRMS patients in the Netherlands starting GA treatment are eligible. Patients are informed by neurologists, nurses, and websites from national MS patient organisations. All data, except on disability, are obtained by patient self-reports on pre-defined and random time points. The number of missed doses and the number of patients having discontinued GA treatment at 6 and 12 months are measures of adherence. Per care discipline the number of sessions and the total duration of care are measures of received care. The full spectrum of non-experimental care that is available in the Netherlands is assessed. Care includes 'physical' contacts, contacts by telephone or internet, health-promoting activities and community care activities. Care received over the preceding 14 days is assessed by patients at baseline and every other week thereafter up to month 12. Every 3 months neurologists and nurses record care disciplines to which patients have been referred.The Dutch Adherence Questionnaire-90 (DAQ-90) is a 90-item questionnaire based on the World Health Organisation (WHO) 2003 report on adherence and comprehensively assesses five domains of evidence-based determinants of adherence: socio-economic, health care and caregivers, disease, treatment, and patient-related factors. In addition, self-efficacy is assessed by the MS Self-Efficacy Scale (MSSES), and mood and health-related quality of life (HRQoL) by the Multiple Sclerosis Quality of Life-54 questionnaire (MSQoL-54). Relapses and adverse events probably or definitively related to GA are also reported., Discussion: In this study data is mainly acquired by patients' self-reporting via the internet. On-line data acquisition by patients does not require study visits to the hospital and can easily be integrated into daily life. The web-based nature of the study is believed to prevent missing data and study drop-outs. Moreover, the automated process of filling in questionnaires ensures completeness and consistency, thus improving data quality. The combination of patient-reported outcomes, fully web-based data capture and nation-wide information to all eligible patients are distinguishing features of the study and contribute to its scientific potential., Trial Registration: Netherlands Trial Register (NTR): NTR2432.

Published
2011
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34. Hematopoietic stem cell transplantation for multiple sclerosis. A retrospective multicenter study.

Author

Fassas A, Passweg JR, Anagnostopoulos A, Kazis A, Kozak T, Havrdova E, Carreras E, Graus F, Kashyap A, Openshaw H, Schipperus M, Deconinck E, Mancardi G, Marmont A, Hansz J, Rabusin M, Zuazu Nagore FJ, Besalduch J, Dentamaro T, Fouillard L, Hertenstein B, La Nasa G, Musso M, Papineschi F, Rowe JM, Saccardi R, Steck A, Kappos L, Gratwohl A, Tyndall A, and Samijn J

Subjects
Adult, Bone Marrow Transplantation adverse effects, Bone Marrow Transplantation mortality, CD4 Lymphocyte Count, Disease Progression, Disease-Free Survival, Female, Hematopoietic Stem Cell Mobilization adverse effects, Humans, Male, Middle Aged, Multiple Sclerosis, Chronic Progressive immunology, Multiple Sclerosis, Chronic Progressive mortality, Retrospective Studies, Treatment Outcome, Hematopoietic Stem Cell Transplantation adverse effects, Hematopoietic Stem Cell Transplantation mortality, Multiple Sclerosis, Chronic Progressive therapy, Transplantation Conditioning adverse effects
Abstract

Rationale: Phase I/II studies of autologous hematopoietic stem cell transplantation (HSCT) for multiple sclerosis ( MS) were initiated, based on results of experimental transplantation in animal models of multiple sclerosis and clinical observations in patients treated concomitantly for malignant disease., Patients: Eighty-five patients with progressive MS were treated with autologous HSCT in 20 centers and reported to the autoimmune disease working party of the European Group for Blood and Marrow Transplantation (EBMT). 52 (61 %) were female, median age was 39 [20-58] years. The median interval from diagnosis to transplant was 7 [1-26] years. Patients suffered from severe disease with a median EDSS score of 6.5 [4.5-8.5]. Active disease prior to transplant was documented in 79 of 82 evaluable cases., Results: The stem cell source was bone marrow in 6 and peripheral blood in 79, and stem cells were mobilized into peripheral blood using either cyclophosphamide combined with growth factors or growth factors alone. Three patients experienced transient neurological complications during the mobilization phase. The high dose regimen included combination chemotherapy, with or without anti-lymphocyte antibodies or, with or without, total body irradiation. The stem cell transplants were purged of lymphocytes in 52 patients. Median follow-up was 16 [3-59] months. There were 7 deaths, 5 due to toxicity and infectious complications, 2 with neurological deterioration. The risk of death of any cause at 3 years was 10 (+/-7)% (95 % confidence interval). Neurological deterioration during transplant was observed in 22 patients; this was transient in most but was associated with MS progression in 6 patients. Neurological improvement by > or = 1 point in the EDSS score was seen in 18 (21 %) patients. Confirmed progression-free survival was 74 (+/-12)% at 3 years being 66 (+/-23)% in patients with primary progressive MS but higher in patients with secondary progressive or relapsing-remitting MS, 78 (+/-13)%; p = 0.59. The probability of confirmed disease progression was 20 (+/-11)%. MRI data were available in 78 patients before transplant showing disease activity (gadolinium enhancing, new or enlarging lesions) in 33 %. Posttransplant MRI showed activity at any time in 5/61 (8 %) evaluable cases., Conclusion: Autologous HSCT suggest positive early results in the management of progressive MS and is feasible. These multicentre data suggest an association with significant mortality risks especially in some patient groups and are being utilised in the planning of future trials to reduce transplant related mortality.

Published
2002
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35. [Double vision as a symptom of a serious disorder].

Author

ter Berg JW, Samijn JP, and Kuks JB

Subjects
Aged, Blepharoptosis etiology, Cranial Nerve Diseases complications, Cranial Nerve Diseases diagnosis, Diagnosis, Differential, Fatigue etiology, Female, Giant Cell Arteritis diagnosis, Headache etiology, Humans, Intracranial Aneurysm diagnosis, Middle Aged, Myasthenia Gravis diagnosis, Ocular Motility Disorders etiology, Diplopia etiology, Giant Cell Arteritis complications, Intracranial Aneurysm complications, Myasthenia Gravis complications
Abstract

Three women, aged 54, 69 and 73 years, respectively, developed diplopia together with ptosis of an upper eyelid during light exercise or fatigue or continuous; in one patient the diplopia was followed by headache and vomiting. The diagnoses made were 'intracranial aneurysm', 'myasthenia gravis' and 'temporal arteritis'. Diplopia may be a symptom of a disorder timely diagnosis and treatment of which may prevent serious consequences.

Published
1998

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