Optimization of health care for young people with rheumatic diseases
Paediatric Rheumatology and Health services research
The group evaluates with substantial support by the Deutsche Rheumastiftung, the health care situation and outcomes of children, adolescents and young adults with inflammatory rheumatic diseases. Particular attention is paid to juvenile idiopathic arthritis (JIA).
In the National Pediatric Rheumatological Database (NPRD), about 14,000 patients with juvenile rheumatic diseases are recorded annually from over 60 pediatric rheumatological centers. The group was able to show that adolescents with JIA have a higher disease burden and a higher risk for an inactive lifestyle, being overweight and having other comorbidities than children. The frequency of mental health problems in young people with JIA is currently being investigated by a short screener on the web-based platform KRhOKo as part of the interdisciplinary research network COACH.
In the JIA inception cohort ICON, 950 JIA patients and almost 500 healthy peers have been observed for approximately 8 years now. The group could show that sociodemographic and clinical parameters such as age at disease onset, JIA category, higher family burden and especially the time between symptom onset and first visit to a rheumatologist predict the outcome of JIA. In addition, we found an inverse correlation of the 25(OH)-vitamin D serum level with the risk of uveitis and a polyarticular-course of JIA.
The Juvenile arthritis Methotrexate/Biologics long-term Observation (JuMBO) is the follow-up register of the national JIA biologic register BiKeR, in which more than 1,600 JIA patients are currently being observed from DMARD start in childhood into adulthood. To date, no serious safety problems have been identified. Rather, we found that the earlier an effective DMARD therapy is started, the higher the chance of drug-free remission and full functional capability and the lower the damage to the joints in adulthood.
In close cooperation with the Deutsche Rheuma-Liga e.V., we develop and evaluate transition resources for young people with rheumatic diseases moving to adult care. According to NPRD data, transition readiness and disease-specific knowledge among young people with JIA are still suboptimal.
Close cooperation with many pediatric and adult rheumatological departments and ophthalmological units is the basis for the successful conduction of the observational studies.
Juvenile rheumatic diseases, juvenile idiopathic arthritis, health care, prognosis, transition
Prof. Dr. med. Kirsten Minden
PD Dr. rer. nat. Jens Klotsche
Dr. rer. medic. Florian Milatz
Dr. med. Claudia Sengler
Martina Niewerth, MPH
Dr. rer. nat. Susann Schweitzer
- Deutsche Rheumastiftung, Research grant Kirsten Minden
- Dr. Gerd Horneff, Asklepios Kinderklinik Sankt Augustin
- PD Dr. Tilmann Kallinich, Universitätsmedizin Charité – Berlin
- Dr. Dirk Foell, Universität Münster
- Dr. Johannes-Peter Haas, Deutsches Zentrum für Kinder- und Jugendrheumatologie, Garmisch Partenkirchen
- PD Dr. Daniel Windschall, St. Josef-Stift, Sendenhorst
- Anton Hospach, Klinikum Stuttgart
- Kirsten Mönkemöller, Kinderkrankenhaus der Stadt Köln
- Frank Weller, Klinikum Bremen Mitte
- Frank Dressler, Medizinische Hochschule Hannover
- Dr. Jasmin Kümmerle-Deschner, Universität Tübingen
- Ivan Foeldvari, Kinderrheumatologische Praxis am AK Eilbek, Hamburg
and 50 other pediatric and more than 250 adult rheumatological sites
- Dr. Arnd Heiligenhaus, Augenabteilung am St. Franziskus Hospital, Münster
- PD Dr. Christoph Tappeiner, Universitätsklinik für Augenheilkunde, Bern, Schweiz and more than 200 ophthalmological sites
- Heinrike Schmeling, University of Calgary, Canada – ICON cohort: Autoantibody analysis
- Dr. Nico Wulffraat, Wilhelmina Ziekenhuis, Utrecht, Niederlande / Prof. Dr. Kimme Hyrich, The University of Manchester, United Kingdom / Prof. Dr. Nicola Ruperto, University of Genoa, Italy – Comorbidities in juvenile idiopathic Arthritis
- Dr. Harald Baumeister, Universität Ulm / Prof. Dr. Reinhard W. Holl, Universität Ulm / PD Dr. Doris Staab, Universitätsmedizin Berlin Charité Berlin / Prof. Dr. Thomas Meissner, Universität Düsseldorf – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare (COACH)
- Falk Hoffmann, Universität Oldenburg – PROCLAIR
- Dr. Burkhard Tönshoff / Prof. Dr. Petra Knaup, Universitätsklinikum Heidelberg – Kinderrheumatologie Online – Kerndokumentation (KRhOKo)
- Dr. Michael Hofer, Centre Hospitalier Universitaire Vaudois, Lausanne, Schweiz – Juvenile Inflammatory Rheumatism Cohorte
- Karl Cattelaens, Monika Mayer, Deutsche Rheuma-Liga, Bonn – Strengthening communication between physicians and young adults with rheumatic diseases in connection with the standardization of programs in transition to adult care
- Deutsche Kinder-Rheumastiftung, München
- Drechsel P, Stüdemann K, Niewerth M, Horneff G, Fischer-Betz R, Seipelt E, Spähtling-Mestekemper S, Aries P, Zink A, Klotsche J,Minden K. Pregnancy outcomes in DMARD-exposed patients with juvenile idiopathic arthritis – Results from a JIA Biologic Registry. Rheumatology (Oxford). 2019 Aug 1
- Milatz F, Klotsche J, Niewerth M, Geisemeyer N, Trauzeddel R, Weißbarth-Riedel E, Kallinich T, Peitz J, Hartmann M,Minden K. 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. Pediatr Rheumatol Online J. 2019 Feb 11;17(1):6.
- Klotsche J, Minden K, Niewerth M, Horneff G. Time spent in inactive disease before MTX withdrawal is relevant with regard to the flare risk in patients with JIA. Ann Rheum Dis. 2018 Jul;77(7):996-1002
- Sengler C, Zink J, Klotsche J, Niewerth M, Liedmann I, Horneff G, Kessel C, Ganser G, Thon A, Haas JP, Hospach A, Weller-Heinemann F, Heiligenhaus A, Foell D, Zink A, Minden K. Vitamin D deficiency is associated with higher disease activity and the risk for uveitis in juvenile idiopathic arthritis – data from a German inception cohort. Arthritis Res Ther. 2018 Dec 13;20(1):276
- Listing M, Mönkemöller K, Liedmann I, Niewerth M, Sengler C, Listing J, Foell D, Heiligenhaus A, Klein A, Horneff G, Ganser G, Haas JP, Klotsche J, Minden K. The majority of patients with newly diagnosed juvenile idiopathic arthritis achieve a health-related quality of life that is similar to that of healthy peers – results of the German multicenter inception cohort (ICON). Arthritis Res Ther 2018;20:106
- Heiligenhaus A, Klotsche J, Tappeiner C, Sengler C, Niewerth M, Liedmann I, Hoeft S, Walscheid K, Lavric M, Foell D, Minden K. Predictive factors and biomarkers for the 2-year outcome of uveitis in juvenile idiopathic arthritis: data from the Inception Cohort of Newly diagnosed patients with Juvenile Idiopathic Arthritis (ICON-JIA) study. Rheumatology (Oxford). 2019 Jun 1;58(6):975-986.
- Minden K, Horneff G, Niewerth M, Seipelt E, Aringer M, Aries P, Foeldvari I, Haas JP, Klein A, Tatsis S, Tenbrock K, Zink A, Klotsche J. The time of DMARD start in Juvenile Idiopathic Arthritis determines the likelihood of a drug-free remission in young adulthood. Arthritis Care Res (Hoboken). 2019 Apr;71(4):471-481.
- ICON – Inception Cohort of newly diagnosed patients with juvenile idiopathic arthritis (funding period: 2015-2021); the ICON consortium consists of the DRFZ, the university Münster and university Essen and the ICON study group consists of 11 pediatric rheumatology centers
- COACH – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare (funding period: 2017-2021); the consortium includes the universities Ulm, Potsdam, Düsseldorf and the DRFZ
- PRO-Kind-Rheuma – Handlungs- und Therapie-Protokolle in der Kinderrheumatologie (funing 2019-2022); the consortium includes the university Aachen (ccordination), the university Münster, Asklepios Kinderklinik Sankt Augustin and the DRFZ
- CiJuVIA – Comorbidities in juvenile idiopathic arthritis (funding 2017-2020); the consortium includes the universities Utrecht, Manchester, the Gaslini childrens´ hospital Genova and the DRFZ