Swiss Rare Disease Registry (SRDR)

Recruiting now

Conditions studied: Rare Diseases

In brief

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.

Key facts

Study ID

NCT05179863

Run by

University of Bern

People needed

500000

Starts

2018-01-01

Expected to finish

2071-01-01

Last updated by the study team

2025-11-28

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Diagnosed with a rare disease
• High suspicion of a rare disease
• Treated or living in Switzerland
• Signed informed consent

You may not qualify if…

• None

Where it is running

• Kantonsspital Aarau, Pädiatrie — Aarau, Switzerland (enrolling)
• Kantonsspital Aarau — Aarau, Switzerland (enrolling)
• Centro Malattie Rare della Svizzera Italiana — Bellinzona, Switzerland (enrolling)
• Center for Rare Diseases, Inselspital — Bern, Switzerland (enrolling)
• University of Bern, Inselspital Bern — Bern, Switzerland (enrolling)
• Center for Rare Diseases, Geneva — Geneva, Switzerland (enrolling)
• Hôpitaux universitaires de Genève, HUG — Geneva, Switzerland (enrolling)
• Center for Rare Diseases, Lausanne — Lausanne, Switzerland (enrolling)
• Centre hospitalier universitaire vaudois, CHUV — Lausanne, Switzerland (enrolling)
• Universitäts-Kinderspital Zürich, Kispi — Zurich, Switzerland (enrolling)
• Universitätsspital Zürich, USZ — Zurich, Switzerland
• Universitätsklinik Balgrist — Zurich, Switzerland
• Center for Rare Diseases, Basel — Basel, Switzerland
• Universitäs-Kinderspital beider Basel, UKBB — Basel, Switzerland
• Universitätsspital Basel, USB — Basel, Switzerland
• Kantonsspital St. Gallen — Sankt Gallen, Switzerland
• Ostschweizer Kinderspital — Sankt Gallen, Switzerland
• Ostschweizer Zentrum für seltene Krankheiten, Pädiatrie — Sankt Gallen, Switzerland
• Ostschweizer Zentrum für seltene Krankheiten — Sankt Gallen, Switzerland
• Center for Rare Diseases, Zurich — Zurich, Switzerland

Full record on ClinicalTrials.gov

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