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Cover of Managing Missing Data in Patient Registries

Managing Missing Data in Patient Registries

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

Research White Paper

, PhD, MSPH (Lead); , PhD; , PhD.

Author Information and Affiliations
Rockville (MD): Agency for Healthcare Research and Quality (US); .
Report No.: 17(18)-EHC015-EF

Excerpt

The purpose of this paper is to review the types of missing data in patient registries, discuss design and operational strategies for avoiding or minimizing missing data, explore analytic strategies for handling missing data, and consider the impact of missingness on the interpretation and reporting of registry findings. These concepts are discussed in the context of internal validity of studies, or the ability to draw conclusions on the study population, rather than generalizability of results to broader populations who were not enrolled and therefore not represented in the study. The topics discussed are applicable to both retrospective and prospective designs and cover both primary and secondary data sources. Where appropriate, reference is made to other chapters in the document, Registries for Evaluating Patient Outcomes: A User’s Guide.

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:

Mack C, Su Z, Westreich D. Managing Missing Patient Data in Patient 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)-EHC015-EF. Rockville, MD: Agency for Healthcare Research and Quality; February 2018. www.effectivehealthcare.ahrq.gov. DOI: https://doi.org/10.23970/AHRQREGISTRIESMISSDATA.

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: NBK493611PMID: 29671990

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