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National Pediatric Rheumatologic Database (NPRD)

Inflammatory rheumatic diseases are among the most common chronic illnesses in childhood and adolescence. It is estimated that around 20,000 children and adolescents are affected nationwide. Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory rheumatic disease, with a prevalence of about 100/100,000 and an incidence of 10/100,000 children under 16 years old. Additionally, there are children and adolescents with other conditions from the rheumatic spectrum, such as collagenoses, vasculitides, and periodic fever syndromes. The National Pediatric Rheumatologic Database (NPRD) provides information on the clinical presentation of juvenile rheumatic diseases, treatments, and associated outcomes.

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

minden@drfz.de

More than 60 pediatric rheumatology centers document over 14,000 children and adolescents each year.

The National Pediatric Rheumatologic Database (NPRD) has been conducted nationwide since 1997. The Gesellschaft für Kinder- und Jugendrheumatologie (GKJR) recommends participation as a quality assurance measure. As part of the documentation, children and adolescents with inflammatory rheumatic diseases who visit pediatric rheumatology centers once a year, along with their treating physicians, are asked to complete standardized doctor and patient or parent questionnaires. The physicians provide information about the diagnosis, disease activity, and treatment. From the patient and parent side, data about the health status and quality of life of the affected individuals are documented.

Documents for participating institutions

Wide range of applications

Since its introduction, the NPRD has established itself as a nationally and internationally recognized instrument for rheumatology healthcare research. The data collected through it are used for quality assurance (benchmarking), as a data source for scientific inquiries, healthcare analyses, study planning, patient information, and public relations. They aim to highlight the development of pediatric rheumatology care, including current standards, temporal trends, and existing deficiencies, as well as to describe the subjective and objective disease burden of rheumatic conditions in childhood and adolescence. In this way, the Kinder-KD can contribute to improving the healthcare situation for children and adolescents with rheumatic diseases.

Selected outcomes

Since the year 2000, the extent of functional limitations in children and adolescents with polyarthritis undergoing medication therapy has significantly decreased. The corresponding questions were answered by parents or patients and reflect the degree of functional impairment caused by the disease in daily life. The proportion of children and adolescents experiencing everyday life without limitations has increased by 10% since 2000.

Further associated projects

The transition of adolescents with chronic illnesses into adult-oriented healthcare is a key focus of the Pediatric and Adolescent Rheumatology working group. A successful transition requires the development of transition competence, meaning sufficient disease knowledge, self-management skills, and a willingness to take on responsibility. The transition process should be supported with standardized, patient-centered materials. This work is based on transition projects funded by the German Federal Ministry of Health (BMG), whose scientific monitoring and evaluation are carried out by our working group.

In addition to the transition projects, based on the NPRD, the joint project ProKind (Projects for Classification, Monitoring, and Therapy in Pediatric Rheumatology) funded by the Innovation Fund investigates how newly diagnosed children and adolescents with juvenile arthritis and connective tissue diseases are treated, what the treatment outcomes are, and whether current recommendations from the Gesellschaft für Kinder- und Jugenrheumatologie (GKJR) are being followed. In recent years, the project has been further expanded with the Pro-AID project.

Pro-AID: Expansion of ProKind-Rheuma to include autoinflammatory fiseases: To improve the early detection, diagnosis, and treatment of autoinflammatory diseases (AID), defined therapeutic goals, standardized regular assessments of disease activity, and consensus-based treatment pathways tailored to the severity of the respective disease have been developed. Pro-AID (Research network for the ImProvement of health of children and adolescents with autoinflammatory diseases) is part of the current ProKind initiative. The project is supported by the Foundation for Children with Rare Diseases “Kindness for Kids.”

Selected publications

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AG Minden

Paediatric Rheumatology and Health Services Research
DRFZ Kinder- und Jugendrheumatologie Arbeitsgruppe Minden