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Optimization of health care for young people with rheumatic diseases

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Paediatric Rheumatology and Health services research

The group evaluates 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 Paediatric Rheumatologic Database (NPRD), about 14,000 patients with juvenile rheumatic diseases are recorded annually from over 60 paediatric 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 cooperation with the diabetes and obesity register for young people, we also assess the burden of the coronavirus pandemic via the NPRD.

In the JIA inception cohort ICON, 975 JIA patients and almost 500 healthy peers have been observed for approximately 10 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 1,700 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.

Further projects linked to the nationwide core documentation of children and adolescents with rheumatic diseases:

  • ProKind: Collection of additional information on therapy in the first year of treatment with the aim of further improving the treatment of children and adolescents with rheumatic diseases
  • COACH: Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare – Screening for mental health in adolescents with JIA
  • TARISMA: Targeted Risk Management in Musculoskeletal Diseases: Identification of health care pathways, patient groups at risk of undersupply, and development of patient-centred care strategies – Activity monitoring in adolescents and young adults with inflammatory rheumatic musculoskeletal diseases (ActiMON)
  • Kick COVID: Collaborative project to assess the impact of the coronavirus pandemic on children and adolescents with rheumatic diseases and their families.

Close cooperation with many pediatric and adult rheumatological departments and ophthalmological units is the basis for the successful conduction of the observational studies.


Paediatric Rheumatology Prof. Dr. med. Kirsten Minden Phone +49 (0)30 28460-669 minden@drfz.de more
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Group leader
Prof. Dr. med. Kirsten Minden
Deputy: PD Dr. Jens Klotsche

Martina Niewerth MPH
Dr. med. Claudia Sengler
Dr. rer. medic. Florian Milatz
Sylvana Baumgarten M.sc.

Data manager
Dipl.-Stat. Ina Liedmann
Jana Hörstermann BA
Nadine Grösch
Cindy Doerwald B.Sc.

MD students
Nadine Betenstehl
Juliane Riess
Henriette Haney
Sabine Kirchner
Laura Montag
Ewelina Türk
Svea Horn
Michaela Heinrich-Rohr

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Approximately 430 rheumatological centers of all levels of care throughout Germany and parts of Austria, Poland and Russia participate in JUMBO, ICON and the National Paediatric Rheumatologic Database.

  • Prof. Dr. Gerd Horneff, Asklepios Kinderklinik Sankt Augustin
  • PD Dr. Tilmann Kallinich, Universitätsmedizin Charité – Berlin
  • Prof. Dr. Dirk Foell, Universitätsklinikum Münster
  • Prof. Dr. Johannes-Peter Haas, Deutsches Zentrum für Kinder- und Jugendrheumatologie, Garmisch Partenkirchen
  • PD Dr. Daniel Windschall, St. Josef-Stift, Sendenhorst
  • Frank Weller, Klinikum Bremen-Mitte
  • Dr. Anton Hospach, Klinikum Stuttgart
  • Dr. Kirsten Mönkemöller, Kinderkrankenhaus der Stadt Köln
  • Dr. Frank Dressler, Medizinische Hochschule Hannover
  • Prof. Dr. Jasmin Kümmerle-Deschner, Universitätsklinikum Tübingen
  • Dr. Ivan Foeldvari, Kinderrheumatologische Praxis am AK Eilbek, Hamburg
  • Prof. Dr. Klaus Tenbrock, Klinikum der RWTH Aachen

And over 50 other paediatric as well as more than 250 adult rheumatologists:

  • Prof. Dr. Arnd Heiligenhaus, Augenabteilung am St. Franziskus Hospital, Münster
  • Prof. Dr. Christoph Tappeiner, Universitätsklinik für Augenheilkunde, Bern, Schweiz and more than 200 ophthalmological sites
  • Dr. Heinrike Schmeling, University of Calgary, Canada – ICON cohort: Autoantibody analysis
  • Prof. 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
  • Prof. Dr. Harald Baumeister, Universität Ulm / Prof. Dr. Reinhard W. Holl, Universität Ulm / Prof. Dr. Petra Warschburger, Universität Potsdam / Prof. Dr. Thomas Meissner, Universität Düsseldorf – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare (COACH)
  • Prof. Dr. Reinhard W. Holl, Universität Ulm / Prof. Dr. Petra Warschburger, Universität Potsdam (Kick COVID)
  • Prof. Dr. Burkhard Tönshoff / Prof. Dr. Petra Knaup, Universitätsklinikum Heidelberg – Kinderrheumatologie Online – Kerndokumentation (KRhOKo)
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[Celebrating 33 years of the DRFZ: Epidemiology and Health Services Research]. Strangfeld A, Albrecht K, Regierer A, Callhoff J, Zink A, Minden K. Z Rheumatol. 2022 Apr 5. doi: 10.1007/s00393-022-01187-4. Online ahead of print. PMID: 35380251 Review. German.

[Primary vasculitides in childhood and adulthood].  Minden K, Thiel J. Z Rheumatol. 2022 Feb;81(1):36-44. doi: 10.1007/s00393-021-01141-w. Epub 2022 Jan 3.PMID: 34978582 Review. German.

Myositis-specific autoantibodies and their associated phenotypes in juvenile dermatomyositis: data from a German cohort. Horn S, Minden K, Speth F, Schwarz T, Dressler F, Grösch N, Haas JP, Hinze C, Horneff G, Hospach A, Kallinich T, Klotsche J, Köstner K, Meisel C, Niewerth M, Oommen PT, Schütz C, Weller-Heinemann F, Unterwalder N, Sengler C. Clin Exp Rheumatol. 2022 Feb;40(2):433-442. doi: 10.55563/clinexprheumatol/94btoy. Epub 2020 Oct 29. PMID: 33124555

Occurrence and Risk Factors of Uveitis in Juvenile Psoriatic Arthritis: Data From a Population-based Nationwide Study in Germany. Baquet-Walscheid K, Rothaus K, Niewerth M, Klotsche J, Minden K, Heiligenhaus A. J Rheumatol. 2022 Jan 15:jrheum.210755. doi: 10.3899/jrheum.210755. Online ahead of print. PMID: 35034000

Neue Kriterien zur Klassifikation und Diagnose der juvenilen Arthritis. Minden K, von Stuckrad SL. Kinder- und Jugendmedizin. 2021; 21 (05): 315-321. DOI – 10.1055/a-1581-4600. https://www.thieme-connect.de/products/ejournals/abstract/10.1055/a-1581-4600?update=true&ERSESSIONTOKEN=aD1Ub1Dx2FvwpdO2mSNHS3Vx2BszjUNXMFDq-18x2d6qndMONUw7j1sNEWUtbP8wx3Dx3DhgVkMhjLsb2X4M3xxVrfq6wx3Dx3D-d4x2FrgR0Sqp5KUK8uh7Xqkwx3Dx3D-6gOkCCiAjjGoRkJFX2VU8gx3Dx3D

Transition Between Treatments: What We Need to Know. Minden K, Klotsche J. J Rheumatol. 2021 Aug;48(8):1198-1200. doi: 10.3899/jrheum.201331. Epub 2021 Apr 15. PMID: 33858980 No abstract available.

A prospective investigation of developmental trajectories of psychosocial adjustment in adolescents facing a chronic condition – study protocol of an observational, multi-center study. Warschburger P, Petersen AC, von Rezori RE, Buchallik F, Baumeister H, Holl RW, Minden K, Müller-Stierlin AS, Reinauer C, Staab D; COACH consortium. BMC Pediatr. 2021 Sep 14;21(1):404. doi: 10.1186/s12887-021-02869-9. PMID: 34521358 Free PMC article.

Clinical manifestations and outcome of SARS-CoV-2 infections in children and adolescents with rheumatic musculoskeletal diseases: data from the National Paediatric Rheumatology Database in Germany. Sengler C, Eulert S, Minden K, Niewerth M, Horneff G, Kuemmerle-Deschner J, Siemer C, Berendes R, Girschick H, Hühn R, Borte M, Hospach A, Emminger W, Armann J, Klein A, Kallinich T. RMD Open. 2021 Jul;7(2):e001687. doi: 10.1136/rmdopen-2021-001687. PMID: 34312307 Free PMC article.

Re-treatment with etanercept is as effective as the initial firstline treatment in patients with juvenile idiopathic arthritis. Klotsche J, Klein A, Niewerth M, Hoff P, Windschall D, Foeldvari I, Haas JP, Horneff G, Minden K. Arthritis Res Ther. 2021 Apr 16;23(1):118. doi: 10.1186/s13075-021-02492-0. PMID: 33863349 Free PMC article.

Enthesitis-related Arthritis: Prevalence and Complications of Associated Uveitis in Children and Adolescents From a Population-based Nationwide Study in Germany. Walscheid K, Glandorf K, Rothaus K, Niewerth M, Klotsche J, Minden K, Heiligenhaus A. J Rheumatol. 2021 Feb;48(2):262-269. doi: 10.3899/jrheum.191085. Epub 2020 Mar 15.PMID: 32173656

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