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2. Patient Satisfaction And Disease Control In Patients With Systemic Lupus Erythematosus Is Not Affected By Switching From Intravenous Belimumab To Subcutaneous Injections

Author

Mucke J, Brinks R, Fischer-Betz R, Richter JG, Sander O, Schneider M, and Chehab G

Subjects
sle, patient satisfaction, b-cell therapy, blys-antibody, Medicine (General), R5-920
Abstract

Johanna Mucke, Ralph Brinks, Rebecca Fischer-Betz, Jutta G Richter, Oliver Sander, Matthias Schneider, Gamal Chehab Policlinic and Hiller Research Unit for Rheumatology, Heinrich Heine University Duesseldorf, Duesseldorf, GermanyCorrespondence: Johanna MuckePoliclinic and Hiller Research Unit for Rheumatology, Heinrich-Heine-University, Moorenstrasse 5, Duesseldorf 40225, GermanyTel +49 211 811 7817Fax +49 211 811 9206Email Johanna.Mucke@med.uni-duesseldorf.dePurpose: Since the launch of belimumab in 2011, the BLyS antibody has been increasingly used in the therapy of systemic Lupus erythematosus (SLE). Comparative studies showed that the intravenous (i.v.) and subcutaneous (s.c.) administration forms do not differ in their efficacy. Since the approval of the s.c. therapy, many patients have been switched from i.v. to s.c. administration. The clinical course of these patients and their satisfaction regarding the drug have not yet been investigated.Methods: A total of 9 patients with SLE were switched from i.v. to s.c. belimumab between 12/2017 and 03/2018. We assessed a self-developed questionnaire on drug satisfaction, disease activity (SLEDAI-2k), serological activity (leukocytes, DNA antibodies, complement), disease damage (SLICC/ACR damage index) and functional status (health-assessment questionnaire) at switching (T0) and after 6 months (T1). Association of the questionnaires with the form of administration (i.v. vs s.c.) was analyzed for each variable separately by linear regression analyses, adjusted for age, gender and disease duration.Results: At switching, disease activity of all patients was well controlled (median SLEDAI-2k = 2 [Interquartile range 0–4]) and the patients were mainly satisfied with their therapy. No evidence for any difference in disease activity, disease damage or patient satisfaction 6 months after switching was found. In tendency, patients were more satisfied with the s.c. administration.Conclusion: The switch from i.v. to s.c. belimumab was successful in all cases and had no effect on disease activity or patient satisfaction. Despite the small sample size, s.c. belimumab seems to offer a good alternative to i.v. application.Keywords: SLE, patient satisfaction, b-cell therapy, BLyS-antibody

Published
2019

9. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

Author

Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., Mosca M., Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., and Mosca M.

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

Published
2022

12. Fatigue bei Patient:innen mit SLE - alles 'nur' eine Frage der Kommunikation?

Author

Düsing, C, Richter, J, Elling-Audersch, C, Fell, D, Schmid-Toll, M, Sander, O, Mucke, J, Haase, I, Fischer-Betz, R, Acar, H, Filla, T, Schneider, M, Chehab, G, Düsing, C, Richter, J, Elling-Audersch, C, Fell, D, Schmid-Toll, M, Sander, O, Mucke, J, Haase, I, Fischer-Betz, R, Acar, H, Filla, T, Schneider, M, and Chehab, G

Published
2023

15. Sicherheit und Wirksamkeitshinweise zum Off-label-Einsatz von Biologikatherapien nach Versagen konventioneller Therapien bei Patienten mit entzündlich rheumatischen Erkrankungen: Ergebnisse eines nationalen Registers (GRAID2)

Author

Proft, F., Schulze-Koops, H., Grunke, M., Schrezenmeier, E., Halleck, F., Henes, J., Unger, L., Schmidt, E., Fiehn, C., Jacobi, A., Iking-Konert, C., Kneitz, C., Schmidt, R. E., Bannert, B., Voll, R. E., Fischer-Betz, R., Kötter, I., Tony, H. P., Holle, J., Aringer, M., Erler, A., Behrens, F., Burmester, G. R., and Dörner, T.

Published
2018
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16. Medikamentöse Therapie

Author

Bolten, W., Krüger, K., Kaiser, H., Keysser, M., Genth, E., Häntzschel, H., Ehlert, A., Wald, A., Kladny, B., Specker, C., Uhlemann, C., Gromnica-Ihle, E., Reinhold-Keller, E., Hein, G., Neeck, G., Michels, H., Nüsslein, H., Schwartz, H., Braun, J., Wollenhaupt, J., Ringe, J. D., Schneider, M., Schwartz-Eywill, M., Oelzner, O., Herzer, P., Keel, P., Dreher, R., Wassenberg, S., Wollina, U., Keitel, W., Rüther, W., Vorbrüggen, W., Zenz, M., Pantel, M., Keysser, G., Fischer-Betz, R., and Deutsche Gesellschaft für Rheumatologie e.V.

Published
2007
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18. Europäische Versorgungsstandards für Menschen mit rheumatoider Arthritis: Übersetzung und Kommentierung der von der EULAR unterstützten Vorschläge des eumusc.net durch eine Task Force von DGRh und VRA mit Unterstützung der Deutschen Rheuma-Liga

Author

Braun, J., Krause, A., Aringer, M., Burmester, G., Bessler, F., Engel, J.-M., Faubel, U., Fischer-Betz, R., Genth, E., Gromnica-Ihle, E., Hellmich, B., Kötter, I., Krüger, K., Lakomek, J., Lorenz, H.-M., Manger, B., Märker-Hermann, E., Minden, K., Müller-Ladner, U., Rautenstrauch, J., Rehart, S., Riemekasten, G., Rudwaleit, M., Rüther, W., Schett, G., Schuch, F., Schulze-Koops, H., Specker, C., Wassenberg, S., Wiek, D., Zink, A., and Schneider, M.

Published
2016
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21. EULAR recommendations for womenʼs health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome

Author

Andreoli, L, Bertsias, G K, Agmon-Levin, N, Brown, S, Cervera, R, Costedoat-Chalumeau, N, Doria, A, Fischer-Betz, R, Forger, F, Moraes-Fontes, M F, Khamashta, M, King, J, Lojacono, A, Marchiori, F, Meroni, P L, Mosca, M, Motta, M, Ostensen, M, Pamfil, C, Raio, L, Schneider, M, Svenungsson, E, Tektonidou, M, Yavuz, S, Boumpas, D, and Tincani, A

Published
2017
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22. Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus: the PISCOS study

Author

Piga, M. Chessa, E. Morand, E.F. Ugarte-Gil, M.F. Tektonidou, M. van Vollenhoven, R. Petri, M. Arnaud, L. Appenzeller, S. Aranow, C. Askanase, A. Avcin, T. Bae, S.-C. Bertsias, G. Bonfa, E. Cairoli, E. Cardiel, M.H. Cervera, R. Chasset, F. Chizzolini, C. Clarke, A.E. Conti, F. Costedoat-Chalumeau, N. Czirják, L. Doria, A. Dörner, T. Espinosa, G. Fischer-Betz, R. Garcìa, M. Gladman, D.D. González, L.A. Gunnarsson, I. Hamijoyo, L. Hanly, J.G. Hasni, S.A. Houssiau, F.A. Inanç, M. Inês, L.S. Isenberg, D. Jacobsen, S. Jan Wu, Y.-J. Kaneko, Y. Katsumata, Y. Lau, C.S. Legge, A.C. Lerang, K. Limper, M. Louthrenoo, W. Luo, S.-F. Marinho, A. Massardo, L. Mathian, A. Mosca, M. Nikpour, M. Pego-Reigosa, J.M. Peschken, C.A. Pons-Estel, B.A. Pons-Estel, G.J. Rahman, A. Rednic, S. Ribi, C. Ruiz-Irastorza, G. Sato, E.I. Saxena, A. Schneider, M. Sebastiani, G.D. Strand, V. Svenungsson, E. Tanaka, Y. Tazi Mezalek, Z. Tee, M.L. Tincani, A. Touma, Z. Troldborg, A. Vasconcelos, C. Vinet, É. Vital, E.M. Voskuyl, A.E. Voss, A. Wallace, D. Ward, M. Zamora, L.D. PISCOS Investigator Group and Piga, M. Chessa, E. Morand, E.F. Ugarte-Gil, M.F. Tektonidou, M. van Vollenhoven, R. Petri, M. Arnaud, L. Appenzeller, S. Aranow, C. Askanase, A. Avcin, T. Bae, S.-C. Bertsias, G. Bonfa, E. Cairoli, E. Cardiel, M.H. Cervera, R. Chasset, F. Chizzolini, C. Clarke, A.E. Conti, F. Costedoat-Chalumeau, N. Czirják, L. Doria, A. Dörner, T. Espinosa, G. Fischer-Betz, R. Garcìa, M. Gladman, D.D. González, L.A. Gunnarsson, I. Hamijoyo, L. Hanly, J.G. Hasni, S.A. Houssiau, F.A. Inanç, M. Inês, L.S. Isenberg, D. Jacobsen, S. Jan Wu, Y.-J. Kaneko, Y. Katsumata, Y. Lau, C.S. Legge, A.C. Lerang, K. Limper, M. Louthrenoo, W. Luo, S.-F. Marinho, A. Massardo, L. Mathian, A. Mosca, M. Nikpour, M. Pego-Reigosa, J.M. Peschken, C.A. Pons-Estel, B.A. Pons-Estel, G.J. Rahman, A. Rednic, S. Ribi, C. Ruiz-Irastorza, G. Sato, E.I. Saxena, A. Schneider, M. Sebastiani, G.D. Strand, V. Svenungsson, E. Tanaka, Y. Tazi Mezalek, Z. Tee, M.L. Tincani, A. Touma, Z. Troldborg, A. Vasconcelos, C. Vinet, É. Vital, E.M. Voskuyl, A.E. Voss, A. Wallace, D. Ward, M. Zamora, L.D. PISCOS Investigator Group

Abstract

The Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus (PISCOS) study aimed to obtain an evidence-based and expert-based consensus standardisation of the Physician Global Assessment (PGA) scoring of disease activity in systemic lupus erythematosus (SLE). An international panel of 79 SLE experts participated in a three-round Delphi consensus process, in which 41 statements related to the PGA in SLE were rated, using a 0 (strongly disagree) to 10 (strongly agree) numerical rating scale. Statements with agreement of 75% or greater were selected and further validated by the expert panel. Consensus was reached on 27 statements, grouped in 14 recommendations, for the use of the PGA in SLE, design of the PGA scale, practical considerations for PGA scoring, and the relationship between PGA values and levels of disease activity. Among these recommendations, the expert panel agreed that the PGA should consist of a 0–3 visual analogue scale for measuring disease activity in patients with SLE in the preceding month. The PGA is intended to rate the overall disease activity, taking into account the severity of active manifestations and clinical laboratory results, but excluding organ damage, serology, and subjective findings unrelated to disease activity. The PGA scale ranges from “no disease activity” (0) to the “most severe disease activity” (3) and incorporates the values 1 and 2 as inner markers to categorise disease activity as mild (≥0·5 to 1), moderate (>1 and ≤2) and severe (>2 to 3). Only experienced physicians can rate the PGA, and it should be preferably scored by the same rater at each visit. The PISCOS results will allow for increased homogeneity and reliability of PGA ratings in routine clinical practice, definitions of remission and low disease activity, and future SLE trials. © 2022 Elsevier Ltd

Published
2022

24. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases:insights after the first 5 years of the ERN ReCONNET

Author

Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., Mosca, Marta, Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., and Mosca, Marta

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

Published
2022

27. AB0675 Health related quality of life in patients with mixed connective tissue disease: A comparison with matched systemic sclerosis patients

Author

Abouyahya, I., primary, Liem, S., additional, Amoura, Z., additional, Fonseca, J. E., additional, Chaigne, B., additional, Cutolo, M., additional, Doria, A., additional, Fischer-Betz, R., additional, Guimaraes, V., additional, Hachulla, E., additional, Huizinga, T., additional, van Laar, J. M., additional, Martin, T., additional, Matucci-Cerinic, M., additional, Montecucco, C., additional, Schneider, M., additional, Smith, V., additional, Tincani, A., additional, Müller-Ladner, U., additional, and de Vries-Bouwstra, J., additional

Published
2022
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30. Health-related quality of life in patients with mixed connective tissue diseases

Author

Abouyahya, I., Liem, S.I.E., Amoura, Z., Fonseca, J.E., Chaigne, B., Cutolo, M., Doria, A., Fischer-Betz, R., Guimaraes, V., Huizinga, T.W.J., Laar, J.M. van, Martin, T., Matucci-Cerinic, M., Montecucco, C., Schneider, M., Smith, V., Muller-Ladner, U., and Vries-Bouwstra, J.K. de

Subjects
quality of life, systemic sclerosis, mixed connective tissue disease
Abstract

Objective. Health-Related Quality of Life (HRQoL) in adult patients with mixed connective tissue disease (MCTD) has not been described so far. Therefore, we performed an explorative study to evaluate HRQoL in MCTD patients.Methods. MCTD patients fulfilling the Kahn criteria and participating in the prospective follow-up cohort for MCTD of the Leiden University Medical Center were included; and matched to systemic sclerosis (SSc) patients based on age, sex and disease duration. Data on disease characteristics and HRQoL (SF36 and EQ-5D) were collected annually. HRQoL was compared between MCTD and SSc patients at baseline. Factors associated with HRQoL in MCTD were identified using linear regression and change in HRQoL over 3 years using linear mixed models.Results. Thirty-four MCTD patients (121 visits) and 102 SSc patients (424 visits) were included. At baseline, MCTD patients presented with interstitial lung disease, cardiac involvement, synovitis and myositis more frequently compared to SSc patients, while use of immunosuppressive medication was less frequent. In both groups, mean SF36 scores were lower than in the general Dutch population. The SF36 subscore "general health perception" was impacted most in both groups (MCTD: 38.5 [SD:7.0], SSc: 39.9 [SD:8.9]). During follow-up, SF36 scores improved in MCTD patients, while EQ5DNL remained stable. No specific characteristics were identified that associated with baseline HRQoL or change in HRQol over time.Conclusion. Like in SSc, HRQoL in MCTD is significantly impaired, especially the general health perception of patients. Evaluation in larger prospective cohorts is needed to identify characteristics that impact HRQol most.

Published
2022

46. Niedrig dosierte Acetylsalicylsäure zur Vorbeugung von Präeklampsien bei SLE-Patientinnen – präkonzeptionelle Beratung führt zu optimiertem Einsatz

Author

Haase, I, Brinks, R, Schneider, M, and Fischer-Betz, R

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Das Risiko einer Präeklampsie ist in Schwangerschaften bei Frauen mit Autoimmunerkrankungen wie dem systemischen Lupus erythematodes erhöht, besonders wenn weitere Risikofaktoren (z.B. Hypertonie, Nierenerkrankung, Antiphospholipidantikörper (aPL)) vorliegen. In der Normalbevölkerung[zum vollständigen Text gelangen Sie über die oben angegebene URL], Deutscher Rheumatologiekongress 2020, 48. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 34. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh)

Published
2020
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47. Einflussfaktoren eingeschränkter Arbeitsproduktivität und Alltagsaktivität bei SLE Patienten – Ergebnisse der Lupus Langzeitstudie (LuLa)

Author

Kernder, AL, Düsing, C, Richter, J, Fischer-Betz, R, Winkler-Rohlfing, B, Aringer, M, Schneider, M, and Chehab, G

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Ziel der Auswertung war die Identifizierung (beeinflussbarer) Faktoren eingeschränkter Arbeitsproduktivität und Alltagsaktivität bei Patienten mit systemischem Lupus erythematodes. Methoden: Die Lupus Langzeitstudie ist eine prospektive Patientenbefragung von Lupuspatienten[zum vollständigen Text gelangen Sie über die oben angegebene URL], Deutscher Rheumatologiekongress 2020, 48. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 34. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh)

Published
2020
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48. What are the topics you care about making trials in lupus more effective? Results of an Open Space meeting of international lupus experts.

Author

Mucke J., Alarcon-Riquelme M., Andersen J., Aringer M., Bombardieri S., Brinks R., Cervera R., Chehab G., Cornet A., Costedoat-Chalumeau N., Czirjak L., Doria A., Fischer-Betz R., Furie R.A., Gatto M., Houssiau F.A., Ines L., Liang M.H., Morand E., Mosca M., Pego-Reigosa J.M., Rua-Figueroa I., Ruiz-Irastorza G., Terrier B., Voss A., Schneider M., Mucke J., Alarcon-Riquelme M., Andersen J., Aringer M., Bombardieri S., Brinks R., Cervera R., Chehab G., Cornet A., Costedoat-Chalumeau N., Czirjak L., Doria A., Fischer-Betz R., Furie R.A., Gatto M., Houssiau F.A., Ines L., Liang M.H., Morand E., Mosca M., Pego-Reigosa J.M., Rua-Figueroa I., Ruiz-Irastorza G., Terrier B., Voss A., and Schneider M.

Abstract

Despite promising candidates for new therapeutic options in the treatment of systemic lupus erythematosus (SLE), many clinical trials have failed in the past few years. The disappointing results have been at least partly be attributed to trial designs. With the aim of stimulating new developments in SLE trial design, an international open space meeting was held on occasion of the European Lupus Meeting 2018 in Duesseldorf, Germany about 'What are the topics you care about for making trials in lupus more effective?'. The Open Space is a participant-driven technology, where the discussion topics and schedule are selected during the meeting by all participants and discussion rounds are led by the people attending encouraging active contributions. Eleven topics were selected for further discussion, of which 6 were voted to be more intensively discussed in two consecutive rounds. Major topics were the optimal handling of glucocorticoids in clinical trials, the improvement of outcome measures, reducing or controlling the placebo response and the identification of biomarkers and stratification parameters. Further, the importance of local and international networks was emphasised. By networking, collaborations are facilitated, patient recruitment is more efficient and treatment can be harmonised thus lead to more successful SLE trials. Further discussions are needed to substantiate the results and develop new trial designs. Copyright © 2020 American Society of Mechanical Engineers (ASME). All rights reserved.

Published
2021

50. The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

Author

Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, Mosca, M, Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, and Mosca, M

Abstract

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.

Published
2021

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