Swiss Rare Disease Registry (SRDR)
SRDR
1 other identifier
observational
500,000
1 country
20
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jan 2018
Longer than P75 for all trials
20 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
January 1, 2018
CompletedFirst Submitted
Initial submission to the registry
December 2, 2021
CompletedFirst Posted
Study publicly available on registry
January 5, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
January 1, 2071
ExpectedStudy Completion
Last participant's last visit for all outcomes
January 1, 2071
November 28, 2025
November 1, 2025
53 years
December 2, 2021
November 26, 2025
Conditions
Outcome Measures
Primary Outcomes (7)
Personal Data
Registering patients personal data
At diagnosis (age 0-99 years)
Diagnosis
Orpha Code of the diagnosed rare disease
At diagnosis (age 0-99 years)
Date of Diagnosis
Date on which the diagnosis was made
At diagnosis (age 0-99 years)
Disease History
History of first occurrence of symptoms
At registration (age 0-99 years)
Diagnostic Method
Diagnostic method that was decisive for the diagnosis
At diagnosis (age 0-99 years)
Molecular genetic information
Name of affected genes and mutations
At diagnosis (age 0-99 years)
Other Registries
Name of other national or international registries the patient is registered
At registration (age 0-99 years)
Study Arms (1)
Patient population
Children, adolescents, and adults with a high suspicion, or a confirmed diagnosis of a rare disease who are treated or living in Switzerland.
Eligibility Criteria
All individuals with a high suspicion, or a confirmed diagnosis of a rare disease who are treated or living in Switzerland.
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
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University of Bernlead
- Federal Office of Public Health, Switzerlandcollaborator
- Universitäts-Kinderspital Zürichcollaborator
- University Children's Hospital Baselcollaborator
- Insel Gruppe AG, University Hospital Berncollaborator
- University Hospital, Zürichcollaborator
- Centre Hospitalier Universitaire Vaudoiscollaborator
- University Hospital, Genevacollaborator
- Proraris Allianz seltener Krankheitencollaborator
- Kosek National Coordination Rare Diseases Switzerlandcollaborator
- Orphanet Suissecollaborator
- University of Zurichcollaborator
- Kantonsspital Aaraucollaborator
- Ente Ospedaliero Cantonale, Bellinzonacollaborator
- Cantonal Hospital of St. Gallencollaborator
- Ostschweizer Kinderspitalcollaborator
- University Hospital, Basel, Switzerlandcollaborator
- Balgrist University Hospitalcollaborator
- Centro Malattie Rare della Svizzera Italianacollaborator
Study Sites (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
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Claudia E Kuehni, Prof. MD
Institute of Social and Preventive Medicine (ISPM)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 80 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
December 2, 2021
First Posted
January 5, 2022
Study Start
January 1, 2018
Primary Completion (Estimated)
January 1, 2071
Study Completion (Estimated)
January 1, 2071
Last Updated
November 28, 2025
Record last verified: 2025-11