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Patient registry

In a patient registry, information about patients who are affected by a particular condition is collected. This enables researchers to find and contact patients for participation in clinical trials. In addition, patients' clinical and genetic details can be collected and made easily available for the researchers.


More information about patient registries can be found here:

EGAN Frequently asked questions about patient registries from the Patients Network for Medical Research and Health
EMA Information from the European Medicines Agency about patient registries
EURORDIS Factsheet from EURORDIS (the voice of rare disease patients in Europe) about patient registries
PARENT The cross-border Patient Registries Initiative (PARENT) provides recommendations and tools for implementation of interoperable and cross-border enabled patient registries
RoPR The Registry of Patient Registries is a database of registry specific information intended to promote collaboration, reduce redundancy, and improve transparency
AHRQ Registries for Evaluating Patient Outcomes: A User’s Guide, 2nd edition, by the Agency for Healthcare Research and Quality (AHRQ)