National registry for rare diseases in Switzerland

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The Swiss Rare Disease Registry (SRDR) is an observational national registry that collects comprehensive epidemiological data on rare diseases affecting individuals of all ages in Switzerland. It aims to improve the care of patients by gathering information on incidence, prevalence, survival, and healthcare quality related to rare diseases. The registry will also serve as a research platform, facilitating participation in both national and international studies, and promoting data harmonization among existing disease-specific registries. By strengthening communication between patients, healthcare providers, and policymakers, the SRDR seeks to enhance the overall understanding and management of rare diseases.

Why it matters

Who can join: the full rules

Inclusion Criteria:

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

Exclusion Criteria:

* None

Where it's running

• Kantonsspital Aarau, Pädiatrie
  Aarau, Switzerland Recruiting
• Kantonsspital Aarau
  Aarau, Switzerland Recruiting
• Centro Malattie Rare della Svizzera Italiana
  Bellinzona, Switzerland Recruiting
• Center for Rare Diseases, Inselspital
  Bern, Switzerland Recruiting
• University of Bern, Inselspital Bern
  Bern, Switzerland Recruiting
• Center for Rare Diseases, Geneva
  Geneva, Switzerland Recruiting

Study contacts

• Principal investigator: Claudia E Kuehni, Prof. MD — Institute of Social and Preventive Medicine (ISPM)
• Study coordinator: Cheryl von Arx
• Email: srdr.ispm@unibe.ch
• Phone: +41 31 684 48 87

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.