National registry for rare diseases in Switzerland

Swiss Rare Disease Registry

This study is creating a national registry to collect important information about rare diseases in Switzerland to help improve care and support for patients of all ages.

Quick facts

• Study type: Observational
• Enrollment: 500000 (estimated)
• Sex: All
• Sponsor: University of Bern (Academic / other)
• Locations: 20 sites (Aarau and 19 other locations)
• Trial ID: NCT05179863 on ClinicalTrials.gov

What this trial studies

The Swiss Rare Disease Registry (SRDR) is an observational national registry that collects comprehensive epidemiological data on rare diseases affecting individuals of all ages in Switzerland. It aims to improve the care of patients by gathering information on incidence, prevalence, survival, and healthcare quality related to rare diseases. The registry will also serve as a research platform, facilitating participation in both national and international studies, and promoting data harmonization among existing disease-specific registries. By strengthening communication between patients, healthcare providers, and policymakers, the SRDR seeks to enhance the overall understanding and management of rare diseases.

Who should consider this trial

Good fit: Ideal candidates for this registry are individuals diagnosed with a rare disease or those with a high suspicion of having one, who are treated or residing in Switzerland.

Not a fit: Patients who do not have a rare disease or are not living in Switzerland may not benefit from this registry.

Why it matters

Potential benefit: If successful, this registry could significantly improve the diagnosis and treatment of rare diseases, leading to better patient outcomes.

How similar studies have performed: Other national registries for rare diseases have shown success in improving patient care and facilitating research, indicating that this approach is both valuable and tested.

Eligibility criteria

Inclusion Criteria:

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

Exclusion Criteria:

* None

Where this trial is running

Aarau and 19 other locations

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

Study contacts

• Principal investigator: Claudia E Kuehni, Prof. MD — Institute of Social and Preventive Medicine (ISPM)
• Study coordinator: Cheryl von Arx

Conditions Rare Diseases