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NETS - Registries

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What are registries and why are they important in drug development?

Registries are databases of information on individuals affected by a certain disease or condition. The 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. The type of information included in a registry will vary for each disease.


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