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Minden group

Optimization of health care for young people with rheumatic diseases

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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 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 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 connected projects:

  • Transition: Strengthening of disease knowledge, self-management skills and willingness of young rheumatics for an optimal transition into adult medicine as well as strengthening the communication between physician and patient
  • 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)

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
Supported by the Rheumastiftung
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Group leader
Prof. Dr. med. Kirsten Minden

Scientists

Martina Niewerth MPH
Dr. med. Claudia Sengler
PD Dr. rer. nat. Jens Klotsche
Dr. rer. medic. Florian Milatz
Dipl.-Math. Sascha Eulert

Data manager
Ina Liedmann MSc
Dr. rer. nat. Susann Schweitzer
Cornelia Stamme-Schäfer
Nils Geisemeyer BA
Jana Hörstermann BA
Nadine Grösch

PhD students
Paula Drechsel
Sabine Kirchner

MD students
Julian Zink
Nina Brüggemann
Michaela Heinrich
Svea Horn
Nadine Betenstehl
Laura Montag

Students
Nina Biernacka
Juliane Lenz
Anneli Rieck
Inga Stüdemann
Christin Woite

Supported by the Rheumastiftung
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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.

Supported by the Rheumastiftung
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Supported by the Rheumastiftung
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