Patient Registries

As part of our funding programme, structured and quality-assured patient registries, some of which are internationally coordinated, and associated biobanks have been established. This infrastructure is central for register based research and to generate knowledge for medical professionals, researchers and patients: the prevalence and characteristics of a disease, as well as disease progression and treatment outcomes, can be systematically recorded and analysed. This is essential for improving healthcare, research and treatment decisions for people living with rare diseases.

As an example, the cancer predisposition syndrome Registry (ADDRess) and the registry for individuals with congenital multi-organ autoimmune diseases (GAIN) are presented here.

– cancer predisposition syndrome registry
– GAIN Registry: a registry for individuals with congenital multi-organ autoimmune diseases
(published in: RKI – Journal of Health Monitoring, 2023)

An overview of all patient registries with a coordinating institution in Germany registered with Orphanet can be found here. For specific registers, we recommend to use the Orphanet Search.

Patient registries established within the German Networks of Rare Diseases