Registries are databases of information on individuals affected by a certain disease or condition. They type of data included in registries will vary depending on the purpose of the registry. Contact registries, which are useful for organizing the disease community and clinical cohorts, include names, contact information, and perhaps some demographics. Registries that are intended to be used for research will also include some clinical information, such as age of onset, symptoms, medical images or test results. They type of information included in a registry will vary with disease. To learn more about registries and why they are important for drug development, click on the links below.
- Genetic Alliance: What Is a Biobank?
What are registries and why are they important in drug development?
