RecruitingNCT05179863

Swiss Rare Disease Registry (SRDR)

Swiss Rare Disease Registry


Sponsor

University of Bern

Enrollment

500,000 participants

Start Date

Jan 1, 2018

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Inclusion Criteria4

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

Exclusion Criteria1

  • None

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Locations(20)

Kantonsspital Aarau, Pädiatrie

Aarau, Switzerland

Kantonsspital Aarau

Aarau, Switzerland

Center for Rare Diseases, Basel

Basel, Switzerland

Universitäs-Kinderspital beider Basel, UKBB

Basel, Switzerland

Universitätsspital Basel, USB

Basel, Switzerland

Centro Malattie Rare della Svizzera Italiana

Bellinzona, Switzerland

Center for Rare Diseases, Inselspital

Bern, Switzerland

University of Bern, Inselspital Bern

Bern, Switzerland

Center for Rare Diseases, Geneva

Geneva, Switzerland

Hôpitaux universitaires de Genève, HUG

Geneva, Switzerland

Center for Rare Diseases, Lausanne

Lausanne, Switzerland

Centre hospitalier universitaire vaudois, CHUV

Lausanne, 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

Universitäts-Kinderspital Zürich, Kispi

Zurich, Switzerland

Universitätsklinik Balgrist

Zurich, Switzerland

Universitätsspital Zürich, USZ

Zurich, Switzerland

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NCT05179863


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