| NCT ID | NCT05179863 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University of Bern |
| Condition | Rare Diseases |
| Study Type | OBSERVATIONAL |
| Enrollment | 500,000 participants |
| Start Date | 2018-01-01 |
| Primary Completion | 2071-01 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 500,000 participants in total. It began in 2018-01-01 with a primary completion date of 2071-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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.
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
Contact & Investigator
Claudia E Kuehni, Prof. MD
PRINCIPAL INVESTIGATOR
Institute of Social and Preventive Medicine (ISPM)
Frequently Asked Questions
Who can join the NCT05179863 clinical trial?
This trial is open to participants of all sexes, studying Rare Diseases. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT05179863 currently recruiting?
Yes, NCT05179863 is actively recruiting participants. Contact the research team at srdr.ispm@unibe.ch for enrollment information.
Where is the NCT05179863 trial being conducted?
This trial is being conducted at Aarau, Switzerland, Aarau, Switzerland, Basel, Switzerland, Basel, Switzerland and 11 additional locations.
Who is sponsoring the NCT05179863 clinical trial?
NCT05179863 is sponsored by University of Bern. The principal investigator is Claudia E Kuehni, Prof. MD at Institute of Social and Preventive Medicine (ISPM). The trial plans to enroll 500,000 participants.
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