Patient- or Participant-Generated Registries: Addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, Third Edition [Internet].

Patient registries can provide important, real-world evidence to inform health decisions made by patients, consumers, providers, as well as regulatory agencies and payers. Many patient registries are sponsored by professional associations, academic institutions, healthcare organizations, or pharmaceutical and medical device companies. Within the past 20 years, patient- or participant-generated registries have emerged as a new form of registry, are an important tool for generating information of direct relevance to the patient community. These registries, created, managed, and/or governed directly by the participants themselves, are an important tool for generating information of direct relevance to the patient community.

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