Swiss Rare Disease Registry (SRDR)

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.

Conditions

• Rare Diseases

Sponsors & Collaborators

• Federal Office of Public Health, Switzerland

  collaborator OTHER_GOV

• Universitäts-Kinderspital Zürich

  collaborator UNKNOWN

• University Children's Hospital Basel

  collaborator OTHER

• Insel Gruppe AG, University Hospital Bern

  collaborator OTHER

• University Hospital, Zürich

  collaborator OTHER

• Centre Hospitalier Universitaire Vaudois

  collaborator OTHER

• University Hospital, Geneva

  collaborator OTHER

• Proraris Allianz seltener Krankheiten

  collaborator UNKNOWN

• Kosek National Coordination Rare Diseases Switzerland

  collaborator UNKNOWN

• Orphanet Suisse

  collaborator UNKNOWN

• University of Zurich

  collaborator OTHER

• Kantonsspital Aarau

  collaborator OTHER

• Ente Ospedaliero Cantonale, Bellinzona

  collaborator OTHER

• Cantonal Hospital of St. Gallen

  collaborator OTHER

• Ostschweizer Kinderspital

  collaborator OTHER

• University Hospital, Basel, Switzerland

  collaborator OTHER

• Balgrist University Hospital

  collaborator OTHER

• Centro Malattie Rare della Svizzera Italiana

  collaborator UNKNOWN

• University of Bern

  lead OTHER

Principal Investigators

• Claudia E Kuehni, Prof. MD · Institute of Social and Preventive Medicine (ISPM)

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2018-01-01

Primary Completion

2071-01-31

Completion

2071-01-31

Countries

• Switzerland

Study Locations