Reporting Participation in Epidemiologic Studies: A Survey of Practice
Abstract
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 (p(trend) = 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.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
A recent survey of epidemiological studies published in 10 general epidemiology, public health and medical journals found that some information regarding participation was provided in 47 of 107 case-control studies (59%), 49 of 154 cohort studies (32%), and 51 of 86 cross-sectional studies (59%).
“A recent survey of epidemiological studies published in 10 general epidemiology, public health and medical journals found that some information regarding participation was provided in 47 of 107 case-control studies (59%), 49 of 154 cohort studies (32%), and 51 of 86 cross-sectional studies (59%) [ 137 ].”
From Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): Explanation and Elaboration (2007) · cites this paper as [137]
There is evidence that participation in epidemiological studies may have declined in recent decades.
“Finally, there is evidence that participation in epidemiological studies may have declined in recent decades [ 137 , 138 ], which underscores the need for transparent reporting [ 139 ].”
From Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): Explanation and Elaboration (2007) · cites this paper as [137]
Cites
Stroup, D. F. (2000) · JAMA · doi:10.1001/jama.283.15.2008 · Cited by 20,623 · see citing works
Moher, D., Cook, D. J., Eastwood, S., Olkin, I., Rennie, D., & Stroup, D. F. (1999) · The Lancet · doi:10.1016/s0140-6736(99)04149-5 · Cited by 4,826 · see citing works
Improving the Quality of Reporting of Randomized Controlled Trials: The CONSORT Statement
Begg, C. (1996) · JAMA · doi:10.1001/jama.1996.03540080059030 · Cited by 3,127 · see citing works
Des Jarlais, D. C., Lyles, C., Crepaz, N., & the TREND Group (2004) · American Journal of Public Health · doi:10.2105/ajph.94.3.361 · Cited by 2,817 · see citing works
Moher, D., Schulz, K. F., & Altman, D. G. (2001) · BMC Medical Research Methodology · doi:10.1186/1471-2288-1-2 · Cited by 2,755 · see citing works
Response rates among control subjects in case-control studies☆
Slattery, M. L., Edwards, S. L., Caan, B. J., Kerber, R. A., & Potter, J. D. (1995) · Annals of Epidemiology · doi:10.1016/1047-2797(94)00113-8 · Cited by 167 · see citing works
Reported Participation in Case-Control Studies: Changes over Time
Olson, S. H. (2001) · American Journal of Epidemiology · doi:10.1093/aje/154.6.574 · Cited by 53 · cited 4× · see citing works
“A previous analysis of participation in 82 case-control studies in the United States and Canada suggested a nonsignificant change in participation for controls of � 0.44 percent per year based on a median year of data collection during 1972–1996 ( 6 ), which is consistent with our results.”
BackgroundMethodResultInfluential
Flagged first, then by citations
Cited by
Sorted by citations
Vandenbroucke, J. P., von Elm, E., Altman, D. G., Gøtzsche, P. C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, J. J., Egger, M., & Initiative, F. T. S. (2007) · PLoS Medicine · doi:10.1371/journal.pmed.0040297 · Cited by 8,613 · see citing works
“cohort studies (32%), and 51 of 86 cross-sectional studies (59%) [137].”
Vandenbroucke, J. P., Elm, E. V., Altman, D. G., Gøtzsche, P. C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, J. J., Egger, M., & initiative, F. T. S. (2007) · Annals of Internal Medicine · doi:10.7326/0003-4819-147-8-200710160-00010-w1 · Cited by 3,543 · see citing works
Vandenbroucke, J. P., von Elm, E., Altman, D. G., Gøtzsche, P. C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, J. J., & Egger, M. (2014) · International Journal of Surgery · doi:10.1016/j.ijsu.2014.07.014 · Cited by 2,969 · see citing works
Vandenbroucke, J. P., von Elm, E., Altman, D. G., Gøtzsche, P. C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, J. J., & Egger, M. (2007) · Epidemiology · doi:10.1097/ede.0b013e3181577511 · Cited by 2,779 · see citing works
Participation Rates in Epidemiologic Studies
Galea, S., & Tracy, M. (2007) · Annals of Epidemiology · doi:10.1016/j.annepidem.2007.03.013 · Cited by 1,877 · see citing works
Genome-wide association analysis identifies 13 new risk loci for schizophrenia
Multicenter Genetic Studies of Schizophrenia Consortium, Ripke, S., Psychosis Endophenotypes International Consortium, Wellcome Trust Case Control Consortium 2, O'Dushlaine, C., Chambert, K., Moran, J. L., Kähler, A. K., Akterin, S., Bergen, S. E., et al. (2013) · Nature Genetics · doi:10.1038/ng.2742 · Cited by 1,496 · see citing works
Enzenbach, C., Wicklein, B., Wirkner, K., & Loeffler, M. (2019) · BMC Medical Research Methodology · doi:10.1186/s12874-019-0779-8 · Cited by 186 · see citing works
Risk of violence from the man involved in the pregnancy after receiving or being denied an abortion
Roberts, S. C., Biggs, M. A., Chibber, K. S., Gould, H., Rocca, C. H., & Foster, D. G. (2014) · BMC Medicine · doi:10.1186/s12916-014-0144-z · Cited by 171 · see citing works
Foster, D. G., Biggs, M. A., Raifman, S., Gipson, J., Kimport, K., & Rocca, C. H. (2018) · JAMA Pediatrics · doi:10.1001/jamapediatrics.2018.1785 · Cited by 127 · see citing works
Ascertaining the size of the symptom iceberg in a UK-wide community-based survey
McAteer, A., Elliott, A. M., & Hannaford, P. C. (2011) · British Journal of General Practice · doi:10.3399/bjgp11x548910 · Cited by 118 · see citing works
Association of ALS with head injury, cigarette smoking and APOE genotypes
Schmidt, S., Kwee, L. C., Allen, K. D., & Oddone, E. Z. (2010) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2010.01.011 · Cited by 117 · see citing works
Is dementia incidence declining in high-income countries? A systematic review and meta-analysis
Roehr, S., Pabst, A., Luck, T., & Riedel-Heller, S. (2018) · Clinical Epidemiology · doi:10.2147/clep.s163649 · Cited by 115 · see citing works
Sleep and school attendance in adolescence: Results from a large population-based study
Hysing, M., Haugland, S., Stormark, K. M., Bøe, T., & Sivertsen, B. (2015) · Scandinavian Journal of Public Health · doi:10.1177/1403494814556647 · Cited by 103 · see citing works
Participation in psychosocial oncology and quality-of-life research: A systematic review
Wakefield, C. E., Fardell, J. E., Doolan, E. L., Aaronson, N. K., Jacobsen, P. B., Cohn, R. J., & King, M. (2017) · The Lancet Oncology · doi:10.1016/s1470-2045(17)30100-6 · Cited by 89 · see citing works
Response rate in the study of cardiovascular risks in adolescents–ERICA.
Silva, T. L. N. D., Klein, C. H., Souza, A. D. M., Barufaldi, L. A., Abreu, G. D. A., Kuschnir, M. C. C., Vasconcellos, M. T. L. D., & Bloch, K. V. (2016) · Revista de Saúde Pública · doi:10.1590/s01518-8787.2016050006730 · Cited by 63 · see citing works
Permuth-Wey, J., & Borenstein, A. R. (2009) · Annals of Epidemiology · doi:10.1016/j.annepidem.2009.01.004 · Cited by 60 · see citing works
Whitley, R., Wang, J., Fleury, M.-J., Liu, A., & Caron, J. (2017) · The Canadian Journal of Psychiatry · doi:10.1177/0706743716677724 · Cited by 58 · see citing works
Foster, D. G., Biggs, M. A., Ralph, L., Gerdts, C., Roberts, S., & Glymour, M. M. (2022) · American Journal of Public Health · doi:10.2105/ajph.2017.304247r · Cited by 55 · see citing works
Chen, X.-J., Barywani, S. B., Hansson, P.-O., Östgärd Thunström, E., Rosengren, A., Ergatoudes, C., Mandalenakis, Z., Caidahl, K., & Fu, M. L. (2019) · Open Heart · doi:10.1136/openhrt-2018-000856 · Cited by 54 · see citing works
A selective follow-up study on a public health survey
Linden-Bostrom, M., & Persson, C. (2013) · The European Journal of Public Health · doi:10.1093/eurpub/ckr193 · Cited by 49 · see citing works
Gill, P. S., Calvert, M., Davis, R., Davies, M. K., Freemantle, N., & Lip, G. Y. H. (2011) · PLoS ONE · doi:10.1371/journal.pone.0026710 · Cited by 43 · see citing works
Strøm, H., Selmer, R., Birkeland, K. I., Schirmer, H., Berg, T. J., Jenum, A. K., Midthjell, K., Berg, C., & Stene, L. C. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-520 · Cited by 39 · see citing works
Schieve, L. A., Harris, S., Maenner, M. J., Alexander, A., & Dowling, N. F. (2018) · Emerging Themes in Epidemiology · doi:10.1186/s12982-018-0081-y · Cited by 12 · see citing works
- Authors
- Morton, L. M., Cahill, J., & Hartge, P.
- Affiliations
- National Institutes of Health (US)
- Westat (United States) (US)
- Corresponding author
- Morton, Lindsay M.
- ORCID
- Morton, Lindsay M.
- Venue
- American Journal of Epidemiology
- Publisher
- Oxford University Press (OUP)
- Published
- 2005-12-07
- Volume
- 163
- Issue
- 3
- Pages
- 197-203
- ISSN
- 0002-9262 (ISSN-L)
- 1476-6256
- OpenAlex
- W2107252782
- Cited by
- 461
- References
- 7
- Citations by year
- 2026: 4 · 2025: 5 · 2024: 4 · 2023: 9 · 2022: 14 · 2021: 16 · 2020: 27 · 2019: 15 · 2018: 34 · 2017: 24 · 2016: 26 · 2015: 35 · 2014: 39 · 2013: 32 · 2012: 36
- FWCI
- 22.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Decision Sciences › Statistics, Probability and Uncertainty › Meta-analysis and systematic reviews
- Keywords
- research participation, self-selection bias, declining participation, reporting practices, case-control study, cohort studies, cross-sectional study, internal validity
- MeSH terms
- Data Collection, Humans, Periodicals as Topic, Retrospective Studies, Time Factors, Reproducibility of Results, Epidemiologic Research Design, Bibliometrics, Selection Bias, Patient Selection, Research Subjects, Refusal to Participate
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
