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American Journal of Epidemiology Advance Access originally published online on December 7, 2005
American Journal of Epidemiology 2006 163(3):197-203; doi:10.1093/aje/kwj036
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American Journal of Epidemiology Copyright © 2005 by the Johns Hopkins Bloomberg School of Public Health All rights reserved; printed in U.S.A.

Special Article

Reporting Participation in Epidemiologic Studies: A Survey of Practice

Lindsay M. Morton1, Jack Cahill2 and Patricia Hartge1

1 Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Rockville, MD
2 Health and Medical Studies Sector, Westat, Rockville, MD

Correspondence to Dr. Lindsay M. Morton, Hormonal and Reproductive Epidemiology Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, 6120 Executive Boulevard, EPS/7055, Rockville, MD 20852 (e-mail: mortonli{at}mail.nih.gov).

Self-selection bias may threaten the internal validity of epidemiologic studies. Studies with a low level of participation are particularly vulnerable to this bias, and commentators note apparent declines in participation in recent years. The authors therefore conducted a retrospective review to survey the practice of reporting participation in epidemiologic studies, to assess changes in participation over time, and to evaluate the impact of increased biologic specimen collection on participation. The authors abstracted selected study characteristics from 355 peer-reviewed, original, analytic-epidemiology research articles published from January 1 to April 30, 2003, in 10 high-impact general epidemiology, public health, and medical journals. At least some information regarding participation was provided in 59% of cross-sectional studies, 44% of case-control studies, and 32% of cohort studies. Participation appears to have declined during 1970–2003 for all study designs. Participation declined most steeply for controls in population-based, case-control studies (–1.86% per year, 95% confidence interval: –3.03, –0.69), with steeper declines after 1990. Proportionately more studies collected biologic specimens over time, particularly for cohort and case-control study designs (ptrend = 0.06 and 0.03, respectively), yet participation was reported separately for the biologic specimen study component in only 27% of studies. The authors conclude that epidemiologists need to address declining participation and to report participation consistently, including for biologic specimen collection.

blood specimen collection; case-control studies; cohort studies; cross-sectional studies; epidemiologic methods; patient participation


Abbreviations: CI, confidence interval


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