Swiss Rare Disease Registry (SRDR)

The SRDR is a national registry that records rare diseases in people of any age who live in Switzerland. It serves as a platform for scientists, health professionals, affected people, and politicians.The SRDR aims to collect epidemiological data on rare diseases, and data on changes to the diagnosis over time. The SRDR will further serve as a research platform and facilitate patient participation in national and international studies. The SRDR will promote harmonization of data and method between the numerous existing disease-specific registries in Switzerland, will strengthen the exchange with international rare disease registries for research and policy, and will build a network for communication for patients and health care providers.

NCT Number	NCT05179863
Lead Sponsor	University of Bern Collaborators: Federal Office of Public Health, Switzerland, Universitäts-Kinderspital Zürich, University Children's Hospital Basel, Insel Gruppe AG, University Hospital Bern, University Hospital, Zürich, Centre Hospitalier Universitaire Vaudois, University Hospital, Geneva, Proraris Allianz seltener Krankheiten, Kosek National Coordination Rare Diseases Switzerland, Orphanet Suisse, University of Zurich, Kantonsspital Aarau, Ente Ospedaliero Cantonale, Bellinzona, Cantonal Hospital of St. Gallen, Ostschweizer Kinderspital, University Hospital, Basel, Switzerland, Balgrist University Hospital, Centro Malattie Rare della Svizzera Italiana
Conditions	Rare Diseases
Enrollment	500,000 participants
Start Date	2018-01-01
Primary Completion	2071-01 (estimated)
Study Completion	2071-01 (estimated)
Updated on ClinicalTrials.gov	2025-11-28