Minden lab

How can we optimize the care of young people with rheumatism?

Introduction
Members
Cooperation partners
Selected Publications
Third party funding projects

Paediatric Rheumatology

Young people with inflammatory rheumatic diseases are better off than ever before however, the potential to further improve disease prognosis is far from exhausted. Supported by the Professorship for Health Services Research funded by the Rheuma Foundation, our research group is looking for approaches to further improve the health care situation of children, adolescents and adults suffering from rheumatic diseases. To this end, we record and evaluate processes and results of rheumatology care and investigate the medical, psychosocial and economic consequences of rheumatic diseases. Particular attention is paid to the most common paediatric rheumatic disease, juvenile idiopathic arthritis (JIA).

Three large prospective observational cohort studies allow us to address various research questions with regard to phenotypes, outcome and its determinants, cost and adequacy of health care provision in JIA:

1. The national paediatric rheumatologic database (NPRD), in which more than 14,000 children and adolescents with juvenile rheumatic diseases from over 60 paediatric rheumatological institutions throughout Germany are recorded each year.

2. The biologic register JuMBO (Juvenile arthritis Methotrexate/Biologics long-term Observation) for young adults with JIA that follows about 1,400 patients into adulthood.

3. The Inception Cohort Of Newly diagnosed children with JIA (ICON), in which 950 JIA patients and almost 500 healthy controls are observed.

Over the last years, we were able to quantify the burden of juvenile rheumatic illnesses and their decrease over time, especially in JIA. Earlier treatment starts and more intensive treatment were accompanied by significant decreases in disease activity, functional limitations in everyday life and severe complications such as rheumatic eye inflammations. During the last years the web-based platform KRhOKo was developed for the national database, which will also be used from 2019 for comparative effectiveness analyses of clinical routine data, a new research field in paediatric rheumatology.

Treatment of early JIA turned out to be costly with an average of about 5,000 Euro per patient and year. However, it allows disease activity control in over 80% of patients and results in a quality of life that is comparable to that of the general population.

Using claims data deficits in the health care provision of young people with JIA and an increase of healthcare costs of JIA by one third during the past 10 years were described.

In close cooperation with the German League against Rheumatism, practice tools and information material for young people with RMDs and physicians were developed and evaluated, as were interventions (e.g. transition camps), with the aim to improve the transition from paediatric to adult rheumatology. In the field of transition, the group has collaborated closely with international and national colleagues.

Group Leader
    Prof. Dr. med. Kirsten Minden

Prof. Dr. med. Kirsten Minden

Deutsches Rheuma-Forschungszentrum Berlin
Paediatric Rheumatology
Charitéplatz 1
10117 Berlin
Germany

Phone+49 (0)30 28460-669
Fax +49 (0)30 28460-626
minden@drfz.de

Key words
Juvenile idiopathic arthritis
Outcomes
Health care provision
Transition
Cost of illness

Supported by the Rheumastiftung
Continue to Members

Group leader
Prof. Dr. med. Kirsten Minden

Deputy group leader
Dr. rer. nat. Jens Klotsche

Scientists
Dr. rer. medic Florian Milatz
Dr. med. Claudia Sengler
Martina Niewerth, MPH

PhD students
Nadine Betenstehl
Nina Brüggemann
Paula Drechsel
Michaela Heinrich
Svea Horn
Sabine Kirchner
Laura Montag
Ewelina Türk
Julian Zink

Medical documentalists
Nils Geisemeyer
Nadine Grösch
Jana Hörstermann
Ina Liedmann
Susann Schweitzer
Cornelia Stamme-Schäfer
Karin Weber

Group Leader
    Prof. Dr. med. Kirsten Minden

Prof. Dr. med. Kirsten Minden

Deutsches Rheuma-Forschungszentrum Berlin
Paediatric Rheumatology
Charitéplatz 1
10117 Berlin
Germany

Phone+49 (0)30 28460-669
Fax +49 (0)30 28460-626
minden@drfz.de

Key words
Juvenile idiopathic arthritis
Outcomes
Health care provision
Transition
Cost of illness

Supported by the Rheumastiftung
Continue to Cooperation partners

Prof. Dr. Gerd Horneff, Asklepios Kinderklinik Sankt Augustin

PD Dr. Tilmann Kallinich, Universitätsmedizin Charité – Berlin

Prof. Dr. Dirk Foell, Universität Münster

Prof. Dr. Johannes-Peter Haas, Deutsches Zentrum für Kinder- und Jugendrheumatologie, Garmisch Partenkirchen

Dr. Gerd Ganser, St. Joseph-Stift, Sendenhorst

Dr. Anton Hospach, Klinikum Stuttgart

Dr. Kirsten Mönkemöller, Kinderkrankenhaus der Stadt Köln

Prof. Dr. Hans-Iko Huppertz, Klinikum Bremen Mitte

Dr. Angelika Thon, Medizinische Hochschule Hannover

Prof. Dr. Jasmin Kümmerle-Deschner, Universitätsklinik Tübingen

Dr. Ivan Foeldvari, Kinderrheumatologische Praxis am AK Eilbek, Hamburg

and 50 other pediatric rheumatologic and more than 200 adult rheumatologic sites

Prof. Dr. Arnd Heiligenhaus, Augenabteilung am St. Franziskus Hospital, Münster

PD Dr. Christoph Tappeiner, Universitätsklinik für Augenheilkunde, Bern, Schweiz

and more than 200 opthalmologic sites

Dr. Heinrike Schmeling, University of Calgary, Canada

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)

Dr. Ulrich Neudorf / PD Dr. Elke Lainka, Universitätsklinik Essen / Prof. Dr. Tim Niehues, HELIOS-Klinikum Krefeld – AID-Net

Falk Hoffmann, Universität Oldenburg – PROCLAIR

Prof. Dr. Burkhard Tönshoff / Prof. Dr. Petra Knaup, Universitätsklinikum Heidelberg – Kinderrheumatologie Online – Kerndokumentation (KRhOKo)

Prof. Dr. Michael Hofer, Centre Hospitalier Universitaire Vaudois, Lausanne, Schweiz – Juvenile Inflammatory Rheumatism Cohorte

Karl Cattelaens, Monika Mayer – Deutsche Rheuma-Liga, Bonn

Deutsche Kinder-Rheumastiftung, München

Group Leader
    Prof. Dr. med. Kirsten Minden

Prof. Dr. med. Kirsten Minden

Deutsches Rheuma-Forschungszentrum Berlin
Paediatric Rheumatology
Charitéplatz 1
10117 Berlin
Germany

Phone+49 (0)30 28460-669
Fax +49 (0)30 28460-626
minden@drfz.de

Key words
Juvenile idiopathic arthritis
Outcomes
Health care provision
Transition
Cost of illness

Supported by the Rheumastiftung
Continue to Selected Publications
  1. Klotsche J, Raab A, Niewerth M, Sengler C, Ganser G, Kallinich T, Niehues T, Hufnagel M, Thon A, Hospach T, Horneff G, Minden K. Outcome and Trends in Treatment of Systemic Juvenile Idiopathic Arthritis in the German National Pediatric Rheumatologic Database, 2000-2013. Arthritis Rheumatol. 2016 Dec;68(12):3023-3034.
  2. Klotsche J, Niewerth M, Haas JP, Huppertz HI, Zink A, Horneff G, Minden K. Long-term safety of etanercept and adalimumab compared to methotrexate in patients with juvenile idiopathic arthritis (JIA). Ann Rheum Dis. 2016 May;75(5):855-61.
  3. Tappeiner C, Schenck S, Niewerth M, Heiligenhaus A, Minden K,Klotsche J. Impact of Antiinflammatory Treatment on the Onset of Uveitis in Juvenile Idiopathic Arthritis: Longitudinal Analysis From a Nationwide Pediatric Rheumatology Database. Arthritis Care Res (Hoboken). 2016 Jan;68(1):46-54.
  4. Beck MC, Glimm AM, Ohrndorf S,Minden K, Trauzeddel R, Werner SG, Horneff G, Backhaus M, Burmester GR, Kallinich T, Girschick H, Klotsche J. Fluorescence optical imaging in pediatric patients with inflammatory and non-inflammatory joint diseases: a comparative study with ultrasonography. Arthritis Res Ther. 2017 Oct 17;19(1):233.
  5. Schenck S, Rosenbauer J, Niewerth M, Klotsche J,Minden K, Schwarz T, Foeldvari I, Horneff G, Weller-Heinemann F, Holl RW, Thon A. Comorbidity of Type 1 Diabetes Mellitus in Patients with Juvenile Idiopathic Arthritis. J Pediatr. 2018 Jan;192:196-203.
Group Leader
    Prof. Dr. med. Kirsten Minden

Prof. Dr. med. Kirsten Minden

Deutsches Rheuma-Forschungszentrum Berlin
Paediatric Rheumatology
Charitéplatz 1
10117 Berlin
Germany

Phone+49 (0)30 28460-669
Fax +49 (0)30 28460-626
minden@drfz.de

Key words
Juvenile idiopathic arthritis
Outcomes
Health care provision
Transition
Cost of illness

Supported by the Rheumastiftung
Continue to Third party funding projects

 

Kinder-KD / KRhOKo Kerndokumentation rheumakranker Kinder und Jugendlicher / Kinderrheumatologie Online – Kerndokumentation Deutsche Kinderrheumastiftung, Industrie Minden 1.1.2009 ongoing
COACH Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare BMBF Minden 1.10.2017 30.09.2020
Comorbidities in Juvenile Idiopathic Arthritis Foreum Minden 1.7.2017 30.06.2020
JUMBO Long-term observation of adult patients with juvenile idiopathic arthritis treated with Etanercept, Adalimumab, or Methotrexate Industrie Minden 1.4.2007 ongoing
ICON Inception cohort of newly-diagnosed patients with juvenile idiopathic arthritis BMBF Minden 1.9.2009 31.08.2021
Transition – Stärkung für den Übergang in eine Erwachsenenversorgung für junge Rheumatiker Deutsche Rheuma-Liga Minden 1.4.2014 31.10.2017
Group Leader
    Prof. Dr. med. Kirsten Minden

Prof. Dr. med. Kirsten Minden

Deutsches Rheuma-Forschungszentrum Berlin
Paediatric Rheumatology
Charitéplatz 1
10117 Berlin
Germany

Phone+49 (0)30 28460-669
Fax +49 (0)30 28460-626
minden@drfz.de

Key words
Juvenile idiopathic arthritis
Outcomes
Health care provision
Transition
Cost of illness

Supported by the Rheumastiftung
Continue to Introduction