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Patient-or participant-generated registries addendum to registries for evaluating patient outcomes : a user's guide

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 pharmace...

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Bibliographic Details
Main Authors: Terry, Sharon, Runkle, Deborah (Author), Wicks, Paul (Author)
Corporate Authors: United States Agency for Healthcare Research and Quality, L&M Policy Research
Format: eBook
Language:English
Published: Rockville, MD Agency for Healthcare Research and Quality 2018, February 2018
Edition:Third edition
Series:Research white paper
Subjects:
Patient Participation
United States
Patient Advocacy
Research Design
Patient Outcome Assessment
Registries
Online Access:
Collection: National Center for Biotechnology Information - Collection details see MPG.ReNa
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520 |a 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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