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Cover of Patient- or Participant-Generated Registries

Patient- or Participant-Generated Registries

Addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, Third Edition

Research White Paper

, MA (Lead); ; , PhD.

Author Information and Affiliations
Rockville (MD): Agency for Healthcare Research and Quality (US); .
Report No.: 17(18)-EHC017-EF

Excerpt

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.

Contents

Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services1, Contract No. 290-2014-00004-C. Prepared by: L&M Policy Research, LLC, Washington, DC

Suggested citation:

Terry S, Runkle D, Wicks P. Patient- or Participant-Generated Registries. White Paper, addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, Third Edition. (Prepared by L&M Policy Research, LLC, under Contract No. 290-2014-00004-C.) AHRQ Publication No. 17(18)-EHC017-EF. Rockville, MD: Agency for Healthcare Research and Quality; February 2018. www.effectivehealthcare.ahrq.gov. DOI: https://doi.org/10.23970/AHRQREGISTRIESGENERATED.

This report is based on research conducted by L&M Policy Research, LLC, with partners OM1 and IQVIA, under contract to the Agency for Healthcare Research and Quality, Rockville, MD (Contract No. 290-2014-00004-C). The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ. Therefore, no statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.

None of the authors have any affiliations or financial involvement that conflicts withthe material presented in this report.

This report may be used and reprinted without permission except those copyrighted materials that are clearly noted in the report. Further reproduction of those copyrighted materials is prohibited without the express permission of copyright holders.

Persons using assistive technology may not be able to fully access information in this report. For assistance contact EPC@ahrq.hhs.gov.

1

5600 Fishers Lane, Rockville, MD 20857; www​.ahrq.gov

Bookshelf ID: NBK493594PMID: 29671988

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