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1. 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

2. 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

4. 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

6. 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

7. 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

9. 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

11. 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

12. 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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13. 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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17. TNF-Inhibitoren in der Schwangerschaft: Beenden, reduzieren oder weiterführen? Beobachtungen aus einer Schwangerschaftssprechstunde

Author

Haase, I, Späthling-Mestekemper, S, Schneider, M, and Fischer-Betz, R

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Studien haben gezeigt, dass etwa die Hälfte aller Frauen mit Rheumatoider Arthritis (RA) in der Schwangerschaft eine antirheumatische Therapie zur Kontrolle der Krankheitsaktivität benötigen. Risikofaktoren für Schübe sind höhere Aktivität in der Frühschwangerschaft[zum vollständigen Text gelangen Sie über die oben angegebene URL], 47. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 33. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), 29. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2019
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18. Psoriasis Arthritis und Schwangerschaft – eine systematische Literaturrecherche

Author

Meißner, Y, Fischer-Betz, R, and Strangfeld, A

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Derzeit gibt es keine einheitlichen Empfehlungen für die Betreuung von Patientinnen mit Psoriasis Arthritis (PsA) während der Schwangerschaft. Ziel dieser Arbeit war es, eine Übersicht zu Krankheitsaktivität und den Ausgang von Schwangerschaften bei Patientinnen mit PsA[zum vollständigen Text gelangen Sie über die oben angegebene URL], 47. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 33. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), 29. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2019
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19. Vorteil einer sehr frühen Diagnosestellung und Therapieeinleitung bei rheumatoider Arthritis

Author

Sander, O, Chehab, G, Richter, J, Pongratz, G, Acar, H, Ostendorf, BC, Fischer-Betz, R, Brinks, R, and Schneider, M

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Das Konzept der frühen Diagnosestellung bei Rheumatoider Arthritis (RA) hat sich im Laufe der letzten Jahre immer weiter gefestigt. Einer der wesentlichen Hindernisse sind lange Wartezeiten auf einen ersten Termin beim Facharzt. Ziel dieser Untersuchung ist, den Nutzen der sehr frühen[zum vollständigen Text gelangen Sie über die oben angegebene URL], 46. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 32. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), Wissenschaftliche Herbsttagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2019
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20. Selbstberichteter Krankheitsschaden bei SLE – 5-Jahres-Verlaufsdaten der LuLa-Studie

Author

Chehab, G, Richter, J, Fischer-Betz, R, Winkler-Rohlfing, B, and Schneider, M

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Krankheitsschaden stellt einen wichtigen klinischen Endpunkt in der Betreuung von Patienten mit systemischen Lupus erythematodes (SLE) dar und ist mit Morbidität und Mortalität assoziiert. Eine regelmäßige Dokumentation wird in den aktuellen Empfehlungen zum Management[zum vollständigen Text gelangen Sie über die oben angegebene URL], 46. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 32. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), Wissenschaftliche Herbsttagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2019
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27. Ausgang von Schwangerschaften bei SLE Patientinnen im Vergleich zu Patientinnen mit anderen inflammatorischen rheumatischen Erkrankungen – Daten aus dem prospektiven Schwangerschaftsregister Rhekiss

Author

Strangfeld, A, Bungartz, C, Weiß, A, Schneider, M, Richter, J, Zink, A, and Fischer-Betz, R

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Patientinnen mit systemischen Lupus erythematodes (SLE) haben ein erhöhtes Risiko für Komplikationen während einer Schwangerschaft. Durch die Identifikation von Risikofaktoren und ein optimiertes Management vor und in der Schwangerschaft ist es für viele SLE-Patientinnen[zum vollständigen Text gelangen Sie über die oben angegebene URL], 45. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 31. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), 27. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2017
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28. Parametrisches Kardiovaskuläres-MRT und myokardiale Deformierungs-Analyse detektieren frühe moykardiale Beteiligung bei Patienten mit systemischem Lupus erythematodes

Author

Sewerin, P, Lachmann, V, Florian, B, Gastl, M, Ostendorf, BC, Fischer-Betz, R, Chehab, G, and Schneider, M

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Die Diagnose einer kardialen Beteiligung bei Patienten mit systemischen Lupus erythematodes (SLE) stellt Rheumatologen häufig vor große Herausforderungen, da häufig Echokardiographie und Elektrokardiographie unauffällige Befunde zeigen obwohl ggf. eine subklinische Mykarditis[zum vollständigen Text gelangen Sie über die oben angegebene URL], 45. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 31. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), 27. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2017
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29. Diagnostische Wertigkeit eines kollagenoseassoziierten Autoantikörper-Multiplex Assays bei systemischem Lupus erythematodes

Author

Böhmer, P, Bleck, E, Richter, J, Fischer-Betz, R, Brinks, R, Schulz-Knappe, P, Rengers, P, Göhler, H, Budde, P, Schneider, M, and Vordenbäumen, S

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Der systemische Lupus erythematodes (SLE) ist gekennzeichnet durch die Produktion multipler Autoantikörper (AK). Spezifische AK haben eine geringe Frequenz, daher ist zu Diagnosezwecken die Messung multipler AK theoretisch vorteilhaft. Ein Multiplex Assay (MA) mit der Detektion zahlreicher[zum vollständigen Text gelangen Sie über die oben angegebene URL], 45. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 31. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), 27. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2017
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30. EULAR recommendations for women's 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. Tincani, A.

Abstract

Objectives: Develop recommendations for women's health issues and family planning in systemic lupus erythematosus (SLE) and/or antiphospholipid syndrome (APS). Methods: Systematic review of evidence followed by modified Delphi method to compile questions, elicit expert opinions and reach consensus. Results: Family planning should be discussed as early as possible after diagnosis. Most women can have successful pregnancies and measures can be taken to reduce the risks of adverse maternal or fetal outcomes. Risk stratification includes disease activity, autoantibody profile, previous vascular and pregnancy morbidity, hypertension and the use of drugs (emphasis on benefits from hydroxychloroquine and antiplatelets/anticoagulants). Hormonal contraception and menopause replacement therapy can be used in patients with stable/inactive disease and low risk of thrombosis. Fertility preservation with gonadotropin-releasing hormone analogues should be considered prior to the use of alkylating agents. Assisted reproduction techniques can be safely used in patients with stable/inactive disease; patients with positive antiphospholipid antibodies/APS should receive anticoagulation and/or low-dose aspirin. Assessment of disease activity, renal function and serological markers is important for diagnosing disease flares and monitoring for obstetrical adverse outcomes. Fetal monitoring includes Doppler ultrasonography and fetal biometry, particularly in the third trimester, to screen for placental insufficiency and small for gestational age fetuses. Screening for gynaecological malignancies is similar to the general population, with increased vigilance for cervical premalignant lesions if exposed to immunosuppressive drugs. Human papillomavirus immunisation can be used in women with stable/inactive disease. Conclusions: Recommendations for women's health issues in SLE and/or APS were developed using an evidence-based approach followed by expert consensus. © Published by the BMJ Publishing Group Limited.

Published
2017

31. A framework for remission in SLE: Consensus findings from a large international task force on definitions of remission in SLE (DORIS)

Author

Van Vollenhoven, R. Voskuyl, A. Bertsias, G. Aranow, C. Aringer, M. Arnaud, L. Askanase, A. Balážová, P. Bonfa, E. Bootsma, H. Boumpas, D. Bruce, I. Cervera, R. Clarke, A. Coney, C. Costedoat-Chalumeau, N. Czirják, L. Derksen, R. Doria, A. Dörner, T. Fischer-Betz, R. Fritsch-Stork, R. Gordon, C. Graninger, W. Györi, N. Houssiau, F. Isenberg, D. Jacobsen, S. Jayne, D. Kuhn, A. Le Guern, V. Lerstrøm, K. Levy, R. MacHado-Ribeiro, F. Mariette, X. Missaykeh, J. Morand, E. Mosca, M. Inanc, M. Navarra, S. Neumann, I. Olesinska, M. Petri, M. Rahman, A. Rekvig, O.P. Rovensky, J. Shoenfeld, Y. Smolen, J. Tincani, A. Urowitz, M. Van Leeuw, B. Vasconcelos, C. Voss, A. Werth, V.P. Zakharova, H. Zoma, A. Schneider, M. Ward, M.

Subjects
skin and connective tissue diseases
Abstract

Objectives Treat-to-target recommendations have identified 'remission' as a target in systemic lupus erythematosus (SLE), but recognise that there is no universally accepted definition for this. Therefore, we initiated a process to achieve consensus on potential definitions for remission in SLE. Methods An international task force of 60 specialists and patient representatives participated in preparatory exercises, a face-to-face meeting and follow-up electronic voting. The level for agreement was set at 90%. Results The task force agreed on eight key statements regarding remission in SLE and three principles to guide the further development of remission definitions: 1. Definitions of remission will be worded as follows: remission in SLE is a durable state characterised by ...................... (reference to symptoms, signs, routine labs). 2. For defining remission, a validated index must be used, for example, clinical systemic lupus erythematosus disease activity index (SLEDAI)=0, British Isles lupus assessment group (BILAG) 2004 D/E only, clinical European consensus lupus outcome measure (ECLAM)=0; with routine laboratory assessments included, and supplemented with physician's global assessment. 3. Distinction is made between remission off and on therapy: remission off therapy requires the patient to be on no other treatment for SLE than maintenance antimalarials; and remission on therapy allows patients to be on stable maintenance antimalarials, low-dose corticosteroids (prednisone ≤5 mg/day), maintenance immunosuppressives and/or maintenance biologics. The task force also agreed that the most appropriate outcomes (dependent variables) for testing the prognostic value (construct validity) of potential remission definitions are: death, damage, flares and measures of health-related quality of life. Conclusions The work of this international task force provides a framework for testing different definitions of remission against long-term outcomes. © Published by the BMJ Publishing Group Limited.

Published
2017

32. A framework for remission in SLE: Consensus findings from a large international task force on definitions of remission in SLE (DORIS).

Author

Tincani A., Voskuyl A., Bertsias G., Aranow C., Aringer M., Arnaud L., Askanase A., Balazova P., Bonfa E., Bootsma H., Boumpas D., Bruce I., Cervera R., Clarke A., Coney C., Costedoat-Chalumeau N., Czirjak L., Rekvig O.P., Rovensky J., Shoenfeld Y., Smolen J., Van Vollenhoven R., Urowitz M., Van Leeuw B., Vasconcelos C., Voss A., Werth V.P., Zakharova H., Zoma A., Schneider M., Ward M., Derksen R., Doria A., Dorner T., Fischer-Betz R., Fritsch-Stork R., Gordon C., Graninger W., Gyori N., Houssiau F., Isenberg D., Jacobsen S., Jayne D., Kuhn A., Le Guern V., Lerstrom K., Levy R., MacHado-Ribeiro F., Mariette X., Missaykeh J., Morand E., Mosca M., Inanc M., Navarra S., Neumann I., Olesinska M., Petri M., Rahman A., Tincani A., Voskuyl A., Bertsias G., Aranow C., Aringer M., Arnaud L., Askanase A., Balazova P., Bonfa E., Bootsma H., Boumpas D., Bruce I., Cervera R., Clarke A., Coney C., Costedoat-Chalumeau N., Czirjak L., Rekvig O.P., Rovensky J., Shoenfeld Y., Smolen J., Van Vollenhoven R., Urowitz M., Van Leeuw B., Vasconcelos C., Voss A., Werth V.P., Zakharova H., Zoma A., Schneider M., Ward M., Derksen R., Doria A., Dorner T., Fischer-Betz R., Fritsch-Stork R., Gordon C., Graninger W., Gyori N., Houssiau F., Isenberg D., Jacobsen S., Jayne D., Kuhn A., Le Guern V., Lerstrom K., Levy R., MacHado-Ribeiro F., Mariette X., Missaykeh J., Morand E., Mosca M., Inanc M., Navarra S., Neumann I., Olesinska M., Petri M., and Rahman A.

Abstract

Objectives Treat-to-target recommendations have identified 'remission' as a target in systemic lupus erythematosus (SLE), but recognise that there is no universally accepted definition for this. Therefore, we initiated a process to achieve consensus on potential definitions for remission in SLE. Methods An international task force of 60 specialists and patient representatives participated in preparatory exercises, a face-to-face meeting and follow-up electronic voting. The level for agreement was set at 90%. Results The task force agreed on eight key statements regarding remission in SLE and three principles to guide the further development of remission definitions: 1. Definitions of remission will be worded as follows: remission in SLE is a durable state characterised by ...................... (reference to symptoms, signs, routine labs). 2. For defining remission, a validated index must be used, for example, clinical systemic lupus erythematosus disease activity index (SLEDAI)=0, British Isles lupus assessment group (BILAG) 2004 D/E only, clinical European consensus lupus outcome measure (ECLAM)=0; with routine laboratory assessments included, and supplemented with physician's global assessment. 3. Distinction is made between remission off and on therapy: remission off therapy requires the patient to be on no other treatment for SLE than maintenance antimalarials; and remission on therapy allows patients to be on stable maintenance antimalarials, low-dose corticosteroids (prednisone <=5 mg/day), maintenance immunosuppressives and/or maintenance biologics. The task force also agreed that the most appropriate outcomes (dependent variables) for testing the prognostic value (construct validity) of potential remission definitions are: death, damage, flares and measures of health-related quality of life. Conclusions The work of this international task force provides a framework for testing different definitions of remission against long-term outcomes.Copyright © Publish

Published
2017

34. Gesundheitliche Kontrollüberzeugungen bei SLE – Ergebnisse der LuLa-Studie

Author

Chehab, G, Richter, J, Fischer-Betz, R, Willers, R, Winkler-Rohlfing, B, and Schneider, M

Subjects
Kontrollüberzeugungen, ddc: 610, Systemischer Lupus erythematodes, 610 Medical sciences, Medicine
Abstract

Einleitung: Gesundheitliche Kontrollüberzeugungen spiegeln die Erwartungshaltung wider, inwieweit eine Person ihre gesundheitlichen Ereignisse und Zustände eigenständig beeinflussen kann, oder diese durch andere Faktoren beeinflusst sieht. Dieses Grundverständnis kann Einfluss auf[zum vollständigen Text gelangen Sie über die oben angegebene URL], 44. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh); 30. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh); 26. Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2016
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36. Schwangerschaft bei Familiärem Mittelmeerfieber mit gesicherter AA Amyloidose der Niere

Author

Fischer-Betz, R, Sander, O, and Schneider, M

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Einleitung: Etablierte Strategien für eine Schwangerschaft bei Patientinnen mit kompliziertem Familiärem Mittelmeerfieber (FMF) fehlen. Eine jetzt 27 jährige türkischstämmige Patientin hatte seit dem 11. Lebensjahr rezidivierende abdominelle und thorakale Schmerzereignisse mit[zum vollständigen Text gelangen Sie über die oben angegebene URL], 43. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh); 29. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh); 25. wissenschaftliche Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2015
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39. Entwicklung und Validierung eines multiplex Autoantikörper-Testsystems für die Diagnostik der rheumatoiden Arthritis: Serologische Diagnostik der 'seronegativen' RA

Author

Vordenbäumen, S, Lüking, A, Theek, C, Brinks, R, Fischer-Betz, R, Richter, J, Bleck, E, Detert, J, Burmester, GR, Schulz-Knappe, P, and Schneider, M

Subjects
seronegativ, ddc: 610, rheumatoide Arthritis, Autoantikörper, 610 Medical sciences, Medicine
Abstract

Einleitung: Autoantikörper (Auto-AK) gegen citrullinierte Peptide (ACPA) und der Rheumafaktor (RF) haben einen hohen Stellenwert in der Diagnostik der rheumatoiden Arthritis (RA). Etwa ein Drittel der Patienten zeigt jedoch weder RF noch ACPA und wird als „seronegativ“ bezeichnet.[for full text, please go to the a.m. URL], 42. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh); 28. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh); 24. wissenschaftliche Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2014
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40. Wie wichtig ist körperliche Aktivität für Patienten mit systemischem Lupus erythematodes? – Ergebnisse der LuLa-Studie

Author

Kloubert, I, Chehab, G, Richter, J, Fischer-Betz, R, Winkler-Rohlfing, B, and Schneider, M

Subjects
LuLa, ddc: 610, SLE, 610 Medical sciences, Medicine, körperliche Aktivität, Lebensqualität
Abstract

Einleitung: Körperliche Aktivität hat in der Primär- und Sekundärprävention in vielen Bereichen der Medizin einen festen Stellenwert. Ziel unserer Untersuchung war es, den Einfluss körperlicher Aktivität auf das Outcome von Patienten mit systemischem Lupus erythematodes[for full text, please go to the a.m. URL], 42. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh); 28. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh); 24. wissenschaftliche Jahrestagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)

Published
2014
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43. Schätzung der Inzidenz seltener Erkrankungen aus Prävalenz-Daten: Machbarkeitsstudie am Beispiel des Systemischen Lupus Erythematodes (SLE)

Author

Brinks, R, Fischer-Betz, R, Schneider, M, and Giani, G

Subjects
Inzidenz, Seltene Erkrankung, ddc: 610, Lupus Erythematosus, Prävalenz, 610 Medical sciences, Medicine
Abstract

Einleitung und Fragestellung: Epidemiologische Daten zu seltenen Erkrankungen sind oftmals nicht oder allenfalls spärlich vorhanden. Die Schätzung der Inzidenz aus Routinedaten ist nur selten zuverlässig möglich [ref:1]. Im Gegensatz dazu bereitet die Erhebung von Prävalenzen[for full text, please go to the a.m. URL], GMDS 2012; 57. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e.V. (GMDS)

Published
2012
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45. Clinical outcomes and safety of rituximab treatment for patients with systemic lupus erythematosus (SLE) - results from a nationwide cohort in Germany (GRAID)

Author

Witt, M., Grunke, M., Proft, F., Baeuerle, M., Aringer, M., Burmester, G., Chehab, G., Fiehn, C., Fischer-Betz, R., Fleck, M., Freivogel, K., Haubitz, M., Koetter, I., Lovric, S., Metzler, C., Rubberth-Roth, A., Schwarting, A., Specker, C., Tony, H-P, Unger, L., Wassenberg, S., Doerner, T., Schulze-Koops, H., Witt, M., Grunke, M., Proft, F., Baeuerle, M., Aringer, M., Burmester, G., Chehab, G., Fiehn, C., Fischer-Betz, R., Fleck, M., Freivogel, K., Haubitz, M., Koetter, I., Lovric, S., Metzler, C., Rubberth-Roth, A., Schwarting, A., Specker, C., Tony, H-P, Unger, L., Wassenberg, S., Doerner, T., and Schulze-Koops, H.

Abstract

ObjectiveThe objective of this article is to evaluate the safety and clinical outcome of rituximab treatment in systemic lupus erythematosus (SLE) patients refractory to standard of care therapy in a real-life setting in Germany. MethodsThe GRAID registry included patients with different autoimmune diseases who were given off-label treatment with rituximab. Data on safety and clinical response were collected retrospectively. In SLE patients, clinical parameters included tender and swollen joint counts, fatigue, myalgia, general wellbeing, Raynaud's and the SLEDAI index. Laboratory tests included dsDNA antibody titres, complement factors, hematologic parameters and proteinuria. Finally, the investigators rated their patients as non-, partial or complete responders based on clinical grounds. ResultsData from 85 SLE patients were collected, 69 female and 16 male, with a mean disease duration of 9.8 years. The mean follow-up period was 9.67.4 months, resulting in 66.8 patient years of observation. A complete response was reported in 37 patients (46.8%), partial response in 27 (34.2%), no response in 15 (19.0%). On average, major clinical as well as laboratory efficacy parameters improved substantially, with the SLEDAI decreasing significantly from 12.2 to 3.3 points. Concerning safety, one infusion reaction leading to discontinuation of treatment occurred. Infections were reported with a rate of 19.5 (including six severe infections) per 100 patient years. ConclusionWith the restrictions of a retrospective data collection, the results of this study confirm data of other registries, which suggest a favourable benefit-risk ratio of rituximab in patients with treatment-refractory SLE.

Published
2013

47. 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

Rosaria Talarico, Silvia Aguilera, Tobias Alexander, Zahir Amoura, Janette Andersen, Laurent Arnaud, Tadej Avcin, Sara Marsal Barril, Lorenzo Beretta, Stefano Bombardieri, Alessandra Bortoluzzi, Coralie Bouillot, Inita Bulina, Gerd R. Burmester, Sara Cannizzo, Lorenzo Cavagna, Benjamin Chaigne, Alain Cornet, Paolo Corti, Nathalie Costedoat-Chalumeau, Zane Dāvidsone, Andrea Doria, Carol Fenech, Alessandro Ferraris, Rebecca Fischer-Betz, João Eurico Fonseca, Charissa Frank, Andrea Gaglioti, Ilaria Galetti, Vera Guimarães, Eric Hachulla, Monica Holmner, Frederic Houssiau, Luca Iaccarino, Søren Jacobsen, Maarten Limper, Fransiska Malfait, Xavier Mariette, Diana Marinello, Thierry Martin, Lisa Matthews, Marco Matucci-Cerinic, Alain Meyer, Jasminka Milas-Ahić, Pia Moinzadeh, Carlomaurizio Montecucco, Luc Mouthon, Ulf Müller-Ladner, György Nagy, Eunice Patarata, Margarita Pileckyte, Chris Pruunsild, Simona Rednic, Vasco C. Romão, Matthias Schneider, Carlo Alberto Scirè, Vanessa Smith, Alberto Sulli, Farah Tamirou, Chiara Tani, Domenica Taruscio, Anna V. Taulaigo, Angela Tincani, Simone Ticciati, Giuseppe Turchetti, P. Martin van Hagen, Jacob M. van Laar, Ana Viera, Jeska K. de Vries-Bouwstra, Johannes Zschocke, Maurizio Cutolo, Marta Mosca, 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, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, and UCL - (SLuc) Service de rhumatologie

Subjects
rare and complex diseases, Health Personnel, rare and complex disease, Immunology, patient care, European Reference Network, rheumatic and musculoskeletal diseases, rheumatic and musculoskeletal disease, Europe, European Reference Networks, Rare Diseases, Rheumatology, Connective Tissue, connective tissue disease, Immunology and Allergy, Humans, Musculoskeletal Diseases, connective tissue diseases, European Commission
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

48. Patient-reported outcomes in large vessel vasculitis: insights from a retrospective analysis of disease activity and associated factors.

Author

Kernder A, Rohde M, Acar H, Düsing C, Fischer-Betz R, Haase I, Mucke J, Sander O, Richter JG, Filla T, Schneider M, and Chehab G

Subjects
Humans, Retrospective Studies, Patient Reported Outcome Measures, Ambulatory Care Facilities, Giant Cell Arteritis diagnosis, Takayasu Arteritis diagnosis
Abstract

Background: Patient-reported outcomes (PROs) play a crucial role in assessing rheumatic diseases, offering insights into disease evaluation and treatment efficacy. This study focuses on PRO assessment in large vessel vasculitides, including Takayasu Arteritis and Giant Cell Arteritis (GCA)., Methods: We retrospectively analyzed routine data from patients treated at our rheumatology clinic over a 10-year span. Patient and physician-rated global disease activity scale (G-DAS) scores, measured on a numeric rating scale (0-10 points), were collected at each visit. Clinical variables like age, sex, body mass index (BMI), disease duration, lab values, pain perception, and questionnaire responses were recorded. Linear regression and generalized additive linear regression (GAM analysis) examined associations between PROs and these factors., Results: The study included 138 patients, primarily diagnosed with GCA (94.4%). Mean follow-up was 2.5 years (0-7.7). Patient and physician G-DAS exhibited a moderate correlation (Pearson R 0.19, CI 0.14-0.24, p < 0.001). Higher patient G-DAS correlated with younger age (CI -3.4 - -1.5, p < 0.001), increased pain (CI 3.5-4, p < 0.001), functional limitations (HAQ, CI 0.5-0.6, p < 0.001), reduced physical (CI 2.3-2.7, p ≤ 0.001) and psychological well-being (CI 2.1-2.5, p < 0.001), and higher BMI (CI 1.3-2.4, p < 0.001). Physician G-DAS correlated with Birmingham Vasculitis Activity Score (V3.0; R 0.42, p 0.046) and were significantly linked to serum CRP elevations (β = 0.04, CI 0.0-0.08, p 0.028)., Conclusions: These findings underscore the need to integrate PRO measures into vasculitis disease management strategies, enhancing the understanding of disease activity from the patient's perspective., (© 2024. The Author(s).)

Published
2024
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49. Determinants of patient and physician global assessments of disease activity in anti-neutrophil cytoplasmic antibody-associated vasculitis.

Author

Rohde M, Kernder A, Acar H, Düsing C, Fischer-Betz R, Haase I, Mucke J, Sander O, Richter J, Filla T, Schneider M, and Chehab G

Abstract

Objective: To compare physician and patient assessments of global disease activity in anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) and to identify associated factors., Methods: Global disease activity scores (0-10 points) were retrospectively analyzed from physicians and patients with AAV at each outpatient visit from 2010 to 2020. We compared the scores and performed a linear regression with a random effects to identify associated factors., Results: Patients ( n  = 143, 1,291 pairs, 52% female) had a mean 64 (±15) years of age and a mean disease duration of 9 (±7) years. Patients and physicians global disease activity assessments showed a moderate correlation (Pearson R 0.31, CI [0.23-0.52], p  < 0.001). Linear regression showed a strong association between the physician-documented disease activity scores and serum CRP levels (β = 0.22, CI [0.18, 0.28]), disease duration (β = -0.022, CI [-0.04,-0.01]) and patients' assessment of disease activity (β = 0.08, CI [0.04, 0.12]). By contrast, patient assessments were strongly associated with the degree of pain (β = 0.30, CI [0.25, 0.35]), functional limitations in daily living (HAQ, β = 0.49, CI [0.21, 0.78]) and the global physical well-being (NRS, β = 0.39, CI [0.32, 0.46])., Conclusion: Patients' and physicians' assessments of disease activity correlated. High CRP levels and disease duration were associated with physician-assessed disease activity scores, while subjective limitations were associated with higher patient-assessed disease activity scores. These findings highlight and support the need to develop and evaluate patient-reported outcomes to assess disease activity in patients diagnosed with AAV., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Rohde, Kernder, Acar, Düsing, Fischer-Betz, Haase, Mucke, Sander, Richter, Filla, Schneider and Chehab.)

Published
2023
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50. Impact of low-dose acetylsalicylic acid on pregnancy outcome in systemic lupus erythematosus: results from a multicentre study.

Author

Tani C, Zucchi D, Haase I, Gerosa M, Larosa M, Cavagna L, Bortoluzzi A, Crisafulli F, Mucke J, Strigini FAL, Baglietto L, Fornili M, Monacci F, Elefante E, Erra R, Bellis E, Padovan M, Andreoli L, Coletto LA, Zanframundo G, Govoni M, Iaccarino L, Tincani A, Doria A, Fischer-Betz R, and Mosca M

Subjects
Aspirin adverse effects, Female, Humans, Infant, Newborn, Pregnancy, Pregnancy Outcome epidemiology, Retrospective Studies, Lupus Erythematosus, Systemic complications, Lupus Erythematosus, Systemic drug therapy, Lupus Erythematosus, Systemic epidemiology, Pre-Eclampsia drug therapy, Pre-Eclampsia epidemiology
Abstract

Objective: It is still a matter of debate whether low-dose acetylsalicylic acid (LDASA) should be prescribed to all patients with SLE during pregnancy. This study aimed at investigating the impact of LDASA on pregnancy outcomes in patients with SLE without history of renal involvement and without antiphospholipid antibodies (aPL)., Methods: This is a retrospective analysis of prospectively monitored pregnancies at seven rheumatology centres. Previous/current renal involvement and aPL positivity were the exclusion criteria. Adverse pregnancy outcome (APO) is the composite outcome of the study and included proteinuric pre-eclampsia, preterm delivery <37 weeks, small-for-gestational age infant, low birth weight <2500 g, intrauterine growth restriction and intrauterine fetal death after 12 weeks of gestation of a morphologically normal fetus., Results: 216 pregnancies in 187 patients were included; 82 pregnancies (38.0%) were exposed to LDASA treatment. No differences in terms of age at conception, disease duration, clinical manifestations, comorbidities and disease flare during pregnancy were observed between patients taking LDASA and those who did not take LDASA during pregnancy. APO was observed in 65 cases (30.1%), including 13 cases (6.1%) of pre-eclampsia. The incidence of all complications was similar in the two groups. However, it is interesting to note that pre-eclampsia had lower frequency in patients taking LDASA versus those not taking LDASA (2.4% vs 8.3%, p=0.14)., Conclusions: In pregnant patients with SLE without renal involvement and were aPL-negative, there is a low risk of severe obstetric complications, such as early pre-eclampsia. LDASA treatment does not provide a statistically significant advantage over these complications. However, a careful individual risk-benefit balance is warranted., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2022
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