Publications

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216 Publications visible to you, out of a total of 216
[RABBIT-SpA: a new disease register for axial spondyloarthritis and psoriatic arthritis]

Abstract (Expand)

BACKGROUND: The treatment of axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) has changed enormously in recent years due to market authorization of a number of new biologicals with different … modes of action and the increasing use of biosimilars. Real-world data on long-term safety and efficacy under routine daily conditions is not yet sufficient. Therefore, the German Rheumatism Research Center has initiated a new cohort study covering axSpA and PsA. OBJECTIVE: Presentation of initial results from the new register RABBIT-SpA, which was started in May 2017. MATERIAL AND METHODS: This is a prospective longitudinal cohort study with a similar study design to the German biologics register RABBIT. Patients can be included at the start of a new treatment either in the so-called index drug group or in the comparison group (conventional systemic treatment, including non-steroidal anti-inflammatory drugs, NSAID). Follow-up per patient should be at least 5 years and preferably 10 years. The RABBIT-SpA uses a web-based documentation system. RESULTS: Up to mid-December 2018 a total of 514 axSpA patients had been documented in RABBIT-SpA, 410 with an index drug and 104 with conventional treatment. There are differences between these treatment groups, e. g. in the duration of the disease and in parameters of disease activity. It is also noticeable that in axSpA patients, approximately 5 years lie between the onset of the symptoms and confirmation of the diagnosis. Of the 355 PsA patients, 265 were included with an index drug and 90 with conventional treatment. Of the PsA patients 86% have a dominant peripheral manifestation. The average number of pressure tender joints is 8 and the average number of swollen joints is 4. CONCLUSION: The online register RABBIT-SpA is well-received by the participating rheumatological institutions. The electronic recording of patient data can be carried out in a reasonable time. Participation in the RABBIT-SpA is open to new rheumatological institutions at any time.

Authors: A. C. Regierer, A. Weiss, X. Baraliakos, A. Zink, J. Listing, A. Strangfeld

Date Published: 2020

Publication Type: Journal

Pregnancy outcomes in DMARD-exposed patients with juvenile idiopathic arthritis—results from a JIA biologic registry

Abstract

Not specified

Authors: Paula Drechsel, Katrin Stüdemann, Martina Niewerth, Gerd Horneff, Rebecca Fischer-Betz, Eva Seipelt, Susanna Spähtling-Mestekemper, Peer Aries, Angela Zink, Jens Klotsche, Kirsten Minden

Date Published: 1st Aug 2019

Publication Type: Journal

Time of Disease‐Modifying Antirheumatic Drug Start in Juvenile Idiopathic Arthritis and the Likelihood of a Drug‐Free Remission in Young Adulthood

Abstract

Not specified

Authors: Kirsten Minden, Gerd Horneff, Martina Niewerth, Eva Seipelt, Martin Aringer, Peer Aries, Ivan Foeldvari, Johannes‐Peter Haas, Ariane Klein, Stefanie Tatsis, Klaus Tenbrock, Angela Zink, Jens Klotsche

Date Published: 1st Mar 2019

Publication Type: Journal

Participation in school sports among children and adolescents with juvenile idiopathic arthritis in the German National Paediatric Rheumatologic Database, 2000–2015: results from a prospective observational cohort study

Abstract

Not specified

Authors: Florian Milatz, Jens Klotsche, Martina Niewerth, Nils Geisemeyer, Ralf Trauzeddel, Elisabeth Weißbarth-Riedel, Tilmann Kallinich, Joachim Peitz, Matthias Hartmann, Kirsten Minden

Date Published: 1st Feb 2019

Publication Type: Journal

European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection

Abstract (Expand)

BACKGROUND: The collaborative initiative of the European Network of Pregnancy Registers in Rheumatology (EuNeP) aims to combine data available in nationwide pregnancy registers to increase knowledge … on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD) and on drug safety during pregnancy and lactation. The objective of this study was to describe the similarities and differences of the member registers. METHODS: From all registers, information about their structure and design was collected, as well as which parameters regarding demographics, maternal outcomes, treatment, course and outcome of pregnancy, and development of the child were available in the respective datasets. Furthermore, the current recruitment status was reported. RESULTS: The four registers (EGR2 (France), RePreg (Switzerland), RevNatus (Norway), and Rhekiss (Germany)) collect information prospectively and nationwide. Patients can be enrolled before conception or during pregnancy. To date, more than 3500 patients in total have been included, and data on 2200 pregnancies with an outcome are available. The distribution of diagnoses in the respective registers varies considerably, and only three entities (rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis) are captured by all the registers. Broad consistency was found in non-disease-specific data items, but differences regarding instruments and categories as well as frequency of data collection were revealed. Disease-specific data items are less homogeneously collected. CONCLUSION: Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses. TRIAL REGISTRATION: Not applicable.

Authors: Y. Meissner, A. Strangfeld, N. Costedoat-Chalumeau, F. Forger, D. Goll, A. Molto, R. Ozdemir, M. Wallenius, R. Fischer-Betz

Date Published: 2019

Publication Type: Journal

[Long-term trends in rheumatology care : Achievements and deficits in 25 years of the German national rheumatology database]

Abstract (Expand)

BACKGROUND: Since 1993, data on the care and quality of life of patients with inflammatory rheumatic diseases have been collected in the German National Database (NDB) of the regional collaborative … rheumatology centers. OBJECTIVE: In this review long-term trends on treatment, disease activity and gainful employment of the most common inflammatory rheumatic diseases are presented and the most important analyses from 25 years of the NDB are summarized. METHODS: Between 15 and 17 rheumatological institutions take part in the core documentation and once a year collect data from a total of more than 10,000 patients. The rheumatologists document the disease status and care, the patients report on their state of health and the effects of the disease. RESULTS: The biologics era at the beginning of the twenty-first century has led to changes in the therapeutic spectrum of most inflammatory rheumatic diseases, especially in rheumatoid arthritis and ankylosing spondylitis. Some basic therapies formerly used are hardly used anymore and glucocorticoids are used less frequently. Methotrexate has remained the standard therapy for rheumatoid arthritis over the years. Nowadays, nearly 30% of patients with rheumatoid arthritis receive treatment with biologics. Disease activity, functional and social restrictions have decreased across all diseases. CONCLUSION: The improved health status of many patients with rheumatic diseases confirms the high level of care provided by the rheumatism centers involved in the NDB. The increasing specification of measuring instruments and the standardization of documentation systems are major challenges that the NDB will have to face in the coming years if it is to remain in the digital age.

Authors: K. Albrecht, J. Callhoff, A. Zink

Date Published: 2019

Publication Type: Journal

Trends in employment and hospitalisation in patients with Sjogren’s syndrome 1996-2016: results from the German National database

Abstract (Expand)

OBJECTIVES: To assess trends in treatments and outcomes in patients with primary Sjogren’s syndrome (pSS), focusing on employment, hospitalisation and medical treatment in the past two decades. METHODS: … From 1996 to 2016, approximately 300 patients with pSS were annually documented in the National Database of the German Collaborative Arthritis Centres. Data on treatment, physicians’ assessments of disease activity, patient-reported outcomes, hospitalisation and employment were collected and compared to patients with rheumatoid arthritis (RA), matched 1:1 for age, sex and disease duration for each calendar year. RESULTS: Patients with pSS (>90% female, age 44 years at disease onset, disease duration 10 years) were more frequently assessed to be in low disease activity in 2016 (93%) than in 1996 (62%), p<0.01. Treatment with antimalarials increased from 1996 to 2016 (31 to 50%, p<0.01) and less patients were on glucocorticosteroids (50 to 34%, p<0.01) but <5% were treated with biologics. Employment (<65 years) increased by 21 percentage points (43 to 64%, p<0.001), exceeding the increase observed for RA patients (+15 percentage points). Early retirement (22 to 10%, p=0.01), hospitalisation/year (13 to 7%, p=0.08) and sick leave (39% in 1997 to 27%, p=0.09) decreased comparably to RA patients. CONCLUSIONS: Overall, similar trends were observed for RA and pSS cohorts despite minor changes in pSS therapy. Work participation has improved significantly over two decades in pSS. A greater perception of pSS without systemic manifestations may have caused a shift towards less severely affected patient cohorts today.

Authors: J. Callhoff, K. Thiele, T. Dorner, A. Zink, J. G. Richter, J. Henes, K. Albrecht

Date Published: 2019

Publication Type: Journal

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