Swiss Rare Disease Registry (SRDR)

Launched by UNIVERSITY OF BERN · Dec 16, 2021

Keywords

ClinConnect Summary

The Swiss Rare Disease Registry (SRDR) is a nationwide project in Switzerland aimed at gathering important information about rare diseases. This registry is designed for people of all ages who have been diagnosed with a rare disease or are suspected of having one. By collecting data on how these diseases are diagnosed and managed over time, the SRDR hopes to support research efforts and help improve care for patients. It will also connect patients, healthcare providers, and researchers, fostering better communication and collaboration.

If you or a family member has been diagnosed with a rare disease or there is a strong suspicion of one and you are receiving treatment in Switzerland, you may be eligible to participate in this registry. Joining the SRDR means you will contribute to a valuable resource that can help advance understanding and treatment of rare diseases. There are no exclusions based on health conditions, so if you meet the criteria, your participation would be welcomed. By taking part, you can help shape future research and improve outcomes for others facing similar health challenges.

Gender

ALL

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