MetabERN: Study on the evolution of rare disease registries

MetabERN has published a new article in the Frontiers in Endocrinology journal analysing rare disease registries and their evolution from single diseases to ERN Registries. The article reveals that while registries are key instruments to achieve a sufficient sample size for clinical research, to guide healthcare planning, and to foster the development and evaluation of diagnostic and therapeutic interventions, the success of future patient registries for rare disease research in Europe critically depends on the compliance with formal requirements, particularly the FAIR data principles and the GDPR to ensure long-term data collection and data exchange in a protected environment.