Balancing patient privacy and research in care delivery

Balancing patient privacy and research in care delivery, including the use of electronic health records (EHRs) for screening and research, is an ongoing challenge. Registries that contain information that is sensitive and confidential represent a unique set of challenges that impact patient populations enrolled in clinical trials. In an “honest-broker” model, the registry shares only de-identified data with investigators. For example, the Brain Health Registry asks the potential participants to complete a series of online tests, allows access to medical

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