Deutsch
Minden group
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 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.
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
Dipl.-Stat. Ina Liedmann
Cornelia Stamme-Schäfer
Jana Hörstermann BA
Nadine Grösch
Anneli Rieck
MD students
Sabine Kirchner
Nina Brüggemann
Nadine Betenstehl
Laura Montag
Juliane Rieß
Henriette Haney
Students
Nina Biernacka
Juliane Lenz
Inga Stüdemann
Nane Stüdemann
Jasmin Ahmad
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
- PD 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 / 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)
- Prof. Dr. Falk Hoffmann, Universität Oldenburg – PROCLAIR
- Prof. Dr. Burkhard Tönshoff / Prof. Dr. Petra Knaup, Universitätsklinikum Heidelberg – Kinderrheumatologie Online – Kerndokumentation (KRhOKo)
- 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). Rheumatology (Oxford). 2020 Mar 1;59(3):603-612. (IF 5.245)
- Heiligenhaus A, Klotsche J, Niewerth M, Horneff G, Ganser G, Haas JP, Minden K. Similarities in clinical course and outcome between juvenile idiopathic arthritis (JIA)-associated and ANA-positive idiopathic anterior uveitis: data from a population-based nationwide study in Germany. Arthritis Res Ther. 2020 Apr 15;22(1):81. (IF 4.269)
- 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. (IF 5.245)
- Lunkenheimer F, Domhardt M, Geirhos A, Kilian R, Mueller-Stierlin AS, Holl RW, Meissner T, Minden K, Moshagen M, Ranz R, Sachser C, Staab D, Warschburger P, Baumeister H; COACH consortium. Effectiveness and cost-effectiveness of guided Internet- and mobile-based CBT for adolescents and young adults with chronic somatic conditions and comorbid depression and anxiety symptoms (youthCOACHCD): study protocol for a multicentre randomized controlled trial. Trials. 2020 Mar 12;21(1):253.
- 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. (IF 2.543)
- 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. (IF 4.149)
- Sengler C, Niewerth M, Holl RW, Kilian R, Meissner T, Staab D, Warschburger P, Baumeister H, Minden K. Psychische Komorbidität bei der juvenilen idiopathischen Arthritis – Bestandsaufnahme und Ausblick. arthritis+ rheuma 2019;39: 46–53.
- Sengler C, Niewerth M, Minden K. [Rheumatic diseases in childhood and adolescence: importance of early multi-professional care]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2020 Jul;63(7):846-855. (IF 1.198)
- Walscheid K, Klotsche J, Tappeiner C, Niewerth M, Föll D, Minden K, Heiligenhaus A. Adherence to ophthalmological screening recommendations and course of uveitis in children with juvenile idiopathic arthritis: Data from the Inception Cohort of Newly diagnosed patients with JIA (ICON-JIA) study. Clin Exp Rheumatol, 2020 Feb 19.
- Walscheid K, Glandorf K, Rothaus K, Niewerth M, Klotsche J, Minden K, Heiligenhaus A. Enthesitis-related arthritis: prevalence and complications of associated uveitis in children and adolescents from a population-based nation-wide study in Germany. J Rheumatol. 2020 Mar 15.
- Sengler C. [New therapy approaches, better outcomes? : Results from inception cohorts for patients with juvenile idiopathic arthritis]. Z Rheumatol. 2019 Sep;78(7):610-619.
- Heiligenhaus A, Minden K, Tappeiner C, Baus H, Bertram B, Deuter C, Foeldvari I, Föll D, Frosch M, Ganser G, Gaubitz M, Günther A, Heinz C, Horneff G, Huemer C, Kopp I, Lommatzsch C, Lutz T, Michels H, Neß T, Neudorf U, Pleyer U, Schneider M, Schulze-Koops H, Thurau S, Zierhut M, Lehmann HW. Update of the evidence based, interdisciplinary guideline for anti-inflammatory treatment of uveitis associated with juvenile idiopathic arthritis. Semin Arthritis Rheum. 2019;49(1):43-55.
- Dolezalova P, Anton J, Avcin T, Beresford MW, Brogan PA, Constantin T, Egert Y, Foeldvari I, Foster HE, Hentgen V, Kone-Paut I, Kuemmerle-Deschner JB, Lahdenne P, Magnusson B, Martini A, McCann L, Minden K, Ozen S, Schoemaker C, Quartier P, Ravelli A, Rumba-Rozenfelde I, Ruperto N, Vastert S, Wouters C, Zulian F, Wulffraat NM; SHARE Consortium and the Paediatric Rheumatology International Trials Organisation (PRINTO) . The European network for care of children with paediatric rheumatic diseases: care across borders. Rheumatology (Oxford). 2019 Jul 1;58(7):1188-1195.
- Foeldvari I, Klotsche J, Simonini G, Edelsten C, Angeles-Han ST, Bangsgaard R, de Boer J, Brumm G, Torrent RB, Constantin T, DeLibero C, Diaz J, Gerloni VM, Guedes M, Heiligenhaus A, Kotaniemi K, Leinonen S, Minden K, Miranda V, Miserocchi E, Nielsen S, Niewerth M, Pontikaki I, de Vicuna CG, Zilhao C, Yeh S, Anton J, Calzada J. Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC). Pediatr Rheumatol Online J. 2019 Oct 1;17(1):66.
- Hradilkova K, Maschmeyer P, Westendorf K, Schliemann H, Husak O, von Stuckrad SL, Kallinich T, Minden K, Durek P, Grün JR, Chang HD, Radbruch A. T helper lymphocytes of chronic inflammation are maintained by fatty acid oxidation and adapt to it through Twist1. Arthritis Rheumatol. 2019 Oct;71(10):1756-1765.
- Klein A, Becker I, Minden K, Foeldvari I, Haas JP, Horneff G. Adalimumab versus adalimumab and methotrexate for the treatment of juvenile idiopathic arthritis: long-term data from the German BIKER registry. Scand J Rheumatol. 2019 Mar;48(2):95-104.
- Klein A, Becker I, Minden K, Hospach A, Schwarz T, Foeldvari I, Huegle B, Borte M, Weller-Heinemann F, Dressler F, Kuemmerle-Deschner J, Oommen PT, Foell D, Trauzeddel R, Rietschel C, Horneff G. Biologic Therapies in Polyarticular Juvenile Idiopathic Arthritis. Comparison of Long-Term Safety Data from the German BIKER Registry. ACR Open Rheumatol. 2020 Jan;2(1):37-47.
- Klein A, Klotsche J, Hügle B, Minden K, Hospach A, Weller-Heinemann F, Schwarz T, Dressler F, Trauzeddel R, Hufnagel M, Foeldvari I, Borte M, Kuemmerle-Deschner J, Brunner J, Oommen PT, Föll D, Tenbrock K, Urban A, Horneff G. Long-term surveillance of biologic therapies in systemic-onset juvenile idiopathic arthritis: data from the German BIKER registry. Rheumatology (Oxford). 2019 Dec 17.
- Klein A, Minden K, Hospach A, Foeldvari I, Weller-Heinemann F, Trauzeddel R, Huppertz HI, Horneff G. Treat-to-target study for improved outcome in polyarticular juvenile idiopathic arthritis. Ann Rheum Dis. 2020 Jul;79(7):969-74.
- Schmidt A, Glimm AM, Haugen IK, Hoff P, Schmittat G, Burmester GR, Klotsche J, Ohrndorf S. Detection of subclinical skin manifestation in patients with psoriasis and psoriatic arthritis by fluorescence optical imaging. Arthritis Res Ther 2020;22(1):192.
- von Schuckmann L, Klotsche J, Suling A, Kahl-Nieke B, Foeldvari I. Temporomandibular joint involvement in patients with juvenile idiopathic arthritis: a retrospective chart review. Scand J Rheumatol 2020;49(4):271-280.
- Friedrich S, Lüders S, Klotsche J, Burmester GR, Riemekasten G, Ohrndorf S. The first composite score predicting Digital Ulcers in systemic sclerosis patients using Clinical data, Imaging and Patient history-CIP-DUS. Arthritis Res Ther 2020;22(1):144.
- Cheng Q, Pelz A, Taddeo A, Khodadadi L, Klotsche J, Hoyer BF, Alexander T, Thiel A, Burmester GR, Radbruch A, Hiepe F. Selective depletion of plasma cells in vivo based on the specificity of their secreted antibodies. Eur J Immunol 2020;50(2):284-291.
- Scheer T, Klotsche J, Len CA, Foeldvari I. Validation and adaptation of a German screening tool to identify patients at risk of juvenile idiopathic arthritis. Rheumatol Int 2020;40(4):643-650.
- Pleyer U, Minden K, Klotsche S, Heiligenhaus A, Foeldvari A. Re: Hughes et al.: Cost-effectiveness analysis of adalimumab for the treatment of uveitis associated with juvenile idiopathic arthritis. (Ophthalmology. 2019;126:415-424). Ophthalmology 2019;126(10):e75-e76.
- Callhoff J, Dietrich T, Chubrieva M, Klotsche J, Zink A. A patient-reported questionnaire developed in a German early arthritis cohort to assess periodontitis in patients with rheumatoid arthritis. Arthritis Res Ther 2019;21(1):197.
- Klotsche J. A global perspective on juvenile idiopathic arthritis. Lancet Child Adolesc Health 2019;3(4):204-206.
- Klotsche J, Niewerth M, Minden K. Arzneimittelsicherheit bei der Therapie rheumatischer Erkrankungen im Kindes- und Jugendalter – Ergebnisse aus JuMBO. Arthritis und Rheuma 2019; 39(04):234-240.
