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Participant retention practices in longitudinal clinical research studies with high retention rates
Open accessAbstract
BACKGROUND: There is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates. METHODS: Longitudinal studies with ≥200 participants, ≥80% retention rates over ≥1 year of follow-up were queried from an Institutional Review Board database at a large research-intensive U.S. university; additional studies were identified through networking. Nineteen (86%) of 22 eligible studies agreed to participate. Through in-depth semi-structured interviews, participants provided retention strategies based on themes identified from previous literature reviews. Synthesis of data was completed by a multidisciplinary team. RESULTS: The most commonly used retention strategies were: study reminders, study visit characteristics, emphasizing study benefits, and contact/scheduling strategies. The research teams were well-functioning, organized, and persistent. Additionally, teams tailored their strategies to their participants, often adapting and innovating their approaches. CONCLUSIONS: These studies included specialized and persistent teams and utilized tailored strategies specific to their cohort and individual participants. Studies' written protocols and published manuscripts often did not reflect the varied strategies employed and adapted through the duration of study. Appropriate retention strategy use requires cultural sensitivity and more research is needed to identify how strategy use varies globally.
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“Furthermore, the high retention rates (75% of patients from the IND phase entered the OP/MAINT phase) and attainment of adequate exposure requirements (as outlined in the International Council for Harmonisation [ICH] E1 guideline) 40 adds to the comprehensiveness of the data collected during this longitudinal study.41,42”
From Esketamine Nasal Spray Plus Oral Antidepressant in Patients With Treatment-Resistant Depression: Assessment of Long-Term Safety in a Phase 3, Open-Label Study (SUSTAIN-2) (2020) · cites this paper as [41]
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Citations
Cites
An Introduction to Qualitative Research
Flick, U. (2023) · SAGE Publications Ltd eBooks · doi:10.4135/9781036231712 · Cited by 9,550
An Introduction to Qualitative Research
Croker, R. A. (2009) · Palgrave Macmillan UK eBooks · doi:10.1057/9780230239517_1 · Cited by 2,349
Morris, J. C., Weintraub, S., Chui, H. C., Cummings, J., DeCarli, C., Ferris, S., Foster, N. L., Galasko, D., Graff-Radford, N., Peskind, E. R., et al. (2006) · Alzheimer Disease & Associated Disorders · doi:10.1097/01.wad.0000213865.09806.92 · Cited by 950
The Look AHEAD Research Group (2003) · Controlled Clinical Trials · doi:10.1016/s0197-2456(03)00064-3 · Cited by 767
How much loss to follow-up is acceptable in long-term randomised trials and prospective studies?
Fewtrell, M. S., Kennedy, K., Singhal, A., Martin, R. M., Ness, A., Hadders-Algra, M., Koletzko, B., & Lucas, A. (2008) · Archives of Disease in Childhood · doi:10.1136/adc.2007.127316 · Cited by 601
Active Surveillance Program for Prostate Cancer: An Update of the Johns Hopkins Experience
Tosoian, J. J., Trock, B. J., Landis, P., Feng, Z., Epstein, J. I., Partin, A. W., Walsh, P. C., & Carter, H. B. (2011) · Journal of Clinical Oncology · doi:10.1200/jco.2010.32.8112 · Cited by 595
DNA Methylation Markers and Early Recurrence in Stage I Lung Cancer
Brock, M. V., Hooker, C. M., Ota-Machida, E., Han, Y. K., Guo, M., Ames, S., Glöckner, S. C., Piantadosi, S., Gabrielson, E. W., Pridham, G., et al. (2008) · New England Journal of Medicine · doi:10.1056/nejmoa0706550 · Cited by 594
A systematic review of the effect of retention methods in population-based cohort studies
Booker, C. L., Harding, S., & Benzeval, M. (2011) · BMC Public Health · doi:10.1186/1471-2458-11-249 · Cited by 302
Needham, D. M., Dinglas, V. D., Bienvenu, O. J., Colantuoni, E., Wozniak, A. W., Rice, T. W., Hopkins, R. O., & for the NIH NHLBI ARDS Network (2013) · BMJ · doi:10.1136/bmj.f1532 · Cited by 284
Self-citationStrategies to improve retention in randomised trials: a Cochrane systematic review and meta-analysis
Brueton, V. C., Tierney, J. F., Stenning, S., Meredith, S., Harding, S., Nazareth, I., & Rait, G. (2014) · BMJ Open · doi:10.1136/bmjopen-2013-003821 · Cited by 253
Systematic review identifies number of strategies important for retaining study participants
Robinson, K. A., Dennison, C. R., Wayman, D. M., Pronovost, P. J., & Needham, D. M. (2007) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2006.11.023 · Cited by 222
Self-citationRobinson, K. A., Dinglas, V. D., Sukrithan, V., Yalamanchilli, R., Méndez-Téllez, P. A., Himmelfarb, C. D., & Needham, D. M. (2015) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2015.04.013 · Cited by 165
Self-citationLongitudinal Study of the Ocular Complications of AIDS
Jabs, D. A., Natta, M. L. V., Holbrook, J. T., Kempen, J. H., Meinert, C. L., & Davis, M. D. (2007) · Ophthalmology · doi:10.1016/j.ophtha.2006.11.008 · Cited by 144
Chuang, Y.-F., An, Y., Bilgel, M., Wong, D. F., Troncoso, J. C., O’Brien, R., Breitner, J. C. S., Ferrucci, L., Resnick, S. M., & Thambisetty, M. (2015) · Molecular Psychiatry · doi:10.1038/mp.2015.129 · Cited by 141
Szanton, S. L., Wolff, J. W., Leff, B., Thorpe, R. J., Tanner, E. K., Boyd, C., Xue, Q., Guralnik, J., Bishai, D., & Gitlin, L. N. (2014) · Contemporary Clinical Trials · doi:10.1016/j.cct.2014.03.005 · Cited by 138
Chronic Renal Insufficiency Cohort Study (CRIC)
Denker, M. G., Boyle, S., Anderson, A. H., Appel, L. J., Chen, J., Fink, J. C., Flack, J. M., Go, A. S., Horwitz, E. J., Hsu, C., et al. (2015) · Clinical Journal of the American Society of Nephrology · doi:10.2215/cjn.04260415 · Cited by 137
The effect of HIV infection on longitudinal lung function decline among IDUs
Drummond, M., Merlo, C. A., Astemborski, J. A., Kalmin, M. M., Kisalu, A., McDyer, J. F., Mehta, S. H., Brown, R. H., Wise, R. A., & Kirk, G. D. (2013) · AIDS · doi:10.1097/qad.0b013e32835e395d · Cited by 125
Use of Online Safety Decision Aid by Abused Women
Eden, K. B., Perrin, N. A., Hanson, G. C., Messing, J. T., Bloom, T. L., Campbell, J. C., Gielen, A. C., Clough, A. S., Barnes-Hoyt, J. S., & Glass, N. E. (2015) · American Journal of Preventive Medicine · doi:10.1016/j.amepre.2014.09.027 · Cited by 103
Alzheimer's Disease Anti‐Inflammatory Prevention Trial: Design, methods, and baseline results
ADAPT Research Group (2009) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2008.09.004 · Cited by 99
Longitudinal Study of the Ocular Complications of AIDS
Jabs, D. A., Natta, M. L. V., Holbrook, J. T., Kempen, J. H., Meinert, C. L., & Davis, M. D. (2007) · Ophthalmology · doi:10.1016/j.ophtha.2006.07.065 · Cited by 94
Study protocol: The Improving Care of Acute Lung Injury Patients (ICAP) study
Needham, D. M., Himmelfarb, C. D., Dowdy, D. W., Méndez-Téllez, P. A., Ciesla, N. D., Desai, S. V., Sevransky, J., Shanholtz, C. B., Scharfstein, D. O., Herridge, M. S., et al. (2005) · Critical Care · doi:10.1186/cc3948 · Cited by 90
Self-citationDinglas, V. D., Hopkins, R. O., Wozniak, A. W., Hough, C. L., Morris, P. E., Jackson, J. C., Méndez-Téllez, P. A., Bienvenu, O. J., Ely, E. W., Colantuoni, E., et al. (2016) · Thorax · doi:10.1136/thoraxjnl-2015-208017 · Cited by 76
Self-citationGupta, A. E., Calfas, K. J., Marshall, S. J., Robinson, T. N., Rock, C. L., Huang, J. S., Epstein-Corbin, M., Servetas, C., Donohue, M., Norman, G. J., et al. (2015) · Contemporary Clinical Trials · doi:10.1016/j.cct.2015.04.002 · Cited by 75
Early participant attrition from clinical trials: role of trial design and logistics
Siddiqi, A.-E.-A., Sikorskii, A. E., Given, C. W., & Given, B. A. (2008) · Clinical Trials · doi:10.1177/1740774508094406 · Cited by 59
Expansion of CTG18.1 Trinucleotide Repeat in TCF4 Is a Potent Driver of Fuchs' Corneal Dystrophy
Vasanth, S., Eghrari, A. O., Gapsis, B. C., Wang, J., Haller, N. F., Stark, W. J., Katsanis, N., Riazuddin, S. A., & Gottsch, J. D. (2015) · Investigative Ophthalmology & Visual Science · doi:10.1167/iovs.14-16122 · Cited by 57
O’Neal, W. K., Anderson, W. H., Basta, P. V., Carretta, E. E., Doerschuk, C. M., Barr, R. G., Bleecker, E. R., Christenson, S. A., Curtis, J. L., Han, M. K., et al. (2014) · Journal of Translational Medicine · doi:10.1186/1479-5876-12-9 · Cited by 52
Ruhl, A. P., Huang, M., Colantuoni, E., Lord, R. K., Dinglas, V. D., Chong, A., Sepúlveda, K. A., Méndez-Téllez, P. A., Shanholtz, C. B., Steinwachs, D. M., et al. (2016) · Critical Care Medicine · doi:10.1097/ccm.0000000000002088 · Cited by 47
Self-citationBhasin-Chhabra, B., Lau, B. M., Atta, M. G., Fine, D. M., Estrella, M. M., Schwartz, G. J., & Lucas, G. M. (2013) · PLoS ONE · doi:10.1371/journal.pone.0082028 · Cited by 39
Taylor, R. M., Mohain, J., Gibson, F., Solanki, A., Whelan, J. S., & Fern, L. A. (2015) · BMC Medical Research Methodology · doi:10.1186/s12874-015-0014-1 · Cited by 36
Staffileno, B. A., Zschunke, J., Weber, M., Gross, L., Fogg, L., & Tangney, C. (2016) · The Journal of Cardiovascular Nursing · doi:10.1097/jcn.0000000000000360 · Cited by 33
Hindmarch, P. N., Hawkins, A., McColl, E., Hayes, M., Majsak‐Newman, G., Ablewhite, J., Deave, T., Kendrick, D., & On behalf of the Keeping Children Safe study group (2015) · Trials · doi:10.1186/s13063-015-0578-4 · Cited by 26
Clough, A. S., Wagman, J. A., Rollins, C. M., Barnes, J., Connor-Smith, J. K., Niolon, P. H., McDowell, S., Martinez-Bell, E., Bloom, T., Baker, C. K., et al. (2010) · Field Methods · doi:10.1177/1525822x10384446 · Cited by 24
the NIH NHLBI ARDS Network, Dinglas, V. D., Huang, M., Sepúlveda, K. A., Pinedo, M., Hopkins, R. O., Colantuoni, E., & Needham, D. M. (2015) · BMC Medical Research Methodology · doi:10.1186/1471-2288-15-5 · Cited by 13
Self-citationRecruitment and Retention Strategies for Clinical Trials in Alzheimer’s Disease
Sabbagh, M. N., Thompson, N., Tweedy, D., Stipho-Majeed, S., Kawas, C. H., & Connor, D. J. (2003) · Pharmaceutical Development and Regulation · doi:10.1007/bf03257386 · Cited by 3
Seliverstov, Y. A., Borzov, A., Niyazov, R., Belyaev, M., & Illarioshkin, S. N. (2017) · Neurology · doi:10.1212/wnl.88.16_supplement.p2.008 · Cited by 2
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Sheehan, K. B. (2018) · Communication Monographs · doi:10.1080/03637751.2017.1342043 · Cited by 408
Wajs, E., Aluisio, L., Holder, R., Daly, E. J., Lane, R., Lim, P., George, J. E., Morrison, R. L., Sanacora, G., Young, A. H., et al. (2020) · The Journal of Clinical Psychiatry · doi:10.4088/jcp.19m12891 · Cited by 308
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Gooding, H. C., Gidding, S. S., Moran, A. E., Redmond, N., Allen, N. B., Bacha, F. F., Burns, T. L., Catov, J. M., Grandner, M. A., Harris, K. M., et al. (2020) · Journal of the American Heart Association · doi:10.1161/jaha.120.016115 · Cited by 204
Metadata
- Authors
- Abshire, M., Dinglas, V. D., Cajita, M. I. A., Eakin, M. N., Needham, D. M., & Himmelfarb, C. D.
- Affiliations
- Johns Hopkins University (US)
- Venue
- BMC Medical Research Methodology
- Published
- 2017-02-20
- Volume
- 17
- Issue
- 1
- Pages
- 30-30
- ISSN
- 1471-2288 (ISSN-L)
- PMC
- PMC5319074
- OpenAlex
- W2590679164
- Cited by
- 274
- References
- 35
- Citations by year
- 2026: 26 · 2025: 40 · 2024: 26 · 2023: 39 · 2022: 26 · 2021: 31 · 2020: 45 · 2019: 26 · 2018: 11 · 2017: 4
- FWCI
- 22.08
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- BMC Medical Research Methodology (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Figshare (submittedVersion, cc-by)
- University of Illinois Chicago (cc-by)
- Funders
- National Heart, Lung, and Blood Institute (R24HL111895)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
- Keywords
- participant retention, cohort retention, retention strategies, cultural sensitivity
- MeSH terms
- Clinical Trials as Topic, Data Collection, Humans, Longitudinal Studies, Patient Dropouts, Research Design
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