Swiss Rare Disease Registry (SRDR)

Condition(s) studied

Study 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

Primary outcome measure(s)

• Personal Data — At diagnosis (age 0-99 years)
  Registering patients personal data
• Diagnosis — At diagnosis (age 0-99 years)
  Orpha Code of the diagnosed rare disease
• Date of Diagnosis — At diagnosis (age 0-99 years)
  Date on which the diagnosis was made
• Disease History — At registration (age 0-99 years)
  History of first occurrence of symptoms
• Diagnostic Method — At diagnosis (age 0-99 years)
  Diagnostic method that was decisive for the diagnosis
• Molecular genetic information — At diagnosis (age 0-99 years)
  Name of affected genes and mutations
• Other Registries — At registration (age 0-99 years)
  Name of other national or international registries the patient is registered

Trial sites (20)

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