Home > Research Projects > Optimization of information transfer at the pediatric/adult rheumatology interface (InfoTrans)
  • Innovationsfonds (G-BA)

Optimization of information transfer at the pediatric/adult rheumatology interface (InfoTrans)

Around one in every thousand young people in Germany suffers from juvenile idiopathic arthritis. Thanks to modern therapies, most patients today have a well-controlled disease and few symptoms. Nevertheless, most patients still require drug treatment as adults. However, the transition from pediatric to adult rheumatology care is often not smooth. InfoTrans aims to identify and close gaps in the transition from pediatric rheumatology to adult care – the transition process.

Laufzeit

2021-2025

Head of project

Prof. Dr. med. Kirsten Minden

Programme Area 2, PA 2 – Epidemiology and Health Services Research

Group leader: Paediatric Rheumatology and Health services research

Liaison working group with Charité - Dep. of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine

Prof. Dr. med. Kirsten Minden

The healthcare situation of young people (ages 16–25) with chronic arthritis is being analyzed across multiple work packages. The study assesses their health status, transition skills, and satisfaction with care. Surveys were conducted among BARMER-insured individuals and participants in the 2022 and 2023 National Pediatric Rheumatologic Database (NPRD).Adolescents and young adults in the NPRD receive a digital report of findings for personal reference and to share with their rheumatologist. This data can be integrated into the “RheDAT” rheumatology documentation software, which is increasingly used in internal rheumatology. This facilitates the transfer of information from pediatric to adult rheumatology.In addition, the health literacy and disease burden of young people with chronic arthritis are analyzed. Particular attention is paid to whether access to additional information via the diagnostic report leads to a greater increase in knowledge and improved skills in the long term.


Further information on the transition to adult rheumatology

Further information on the transition to adult rheumatology can be found here:

„Mein Rheuma wird erwachsen“ der Deutschen Rheuma-Liga (DRL)

Comprehensive information and useful tips on rheumatism and the transition from pediatric to adult rheumatology: In addition to helpful videos and checklists, you will also find testimonials from young people who have already successfully made the transition to adult rheumatology and are now available as transition peers to provide you with advice and support.

Here you can actively search for rheumatologists in your area who provide further care.

„Gesellschaft für Kinder – und Jugendrheumatologie (GKJR)

Team

Jens Klotsche

Martina Niewerth,

Nadine Grösch,

Jana Tomuscheit,

Florian Milatz,

InfoTrans is a joint project between the German Rheumatism Research Center, the BARMER health insurance company and Heidelberg University Hospital. Cooperation partners are 50 pediatric rheumatology centers participating in the NPRD, the German Rheumatism League (Deutsche Rheuma-Liga), the Society for Pediatric and Adolescent Rheumatology (GKJR) and the RheDAT platform of the Professional Association of Rheumatologists (BDRh).

AG Minden

Kinder- und Jugendrheumatologie
DRFZ Kinder- und Jugendrheumatologie Arbeitsgruppe Minden