Cohort Retention Tools

One of the aims of this project is to assist researchers conducting long-term outcomes studies to maximize retention of research participants.

Victor Dinglas, MPH discusses (click image for the video) lessons learned regarding cohort retention including dispelling common myths in the field. He then discusses a Cohort Retention Toolbox (see menu below) which contains content developed based on a systematic review of the literature and semi-structured interviews of clinical researchers. Lastly, he discusses a case study that used many of these tools.

Below are tools we have available to help researchers maximize retention of research participants.

• Participant Contact Information Form
• Follow-up Protocols
• Locating Participants
• Retention Strategies from Systematic Review 
• Communication Templates and Manuals
• Staff Training
• Other Tools
• Presentations
• Helpful links
  • COUCH Health
    • Strategic patient retention — how do we enable participants to stay on clinical research studies?
    • Three barriers to participation of minoritized communities in clinical research, and how to overcome them
    • The impact of socioeconomic factors on clinical trial participation: A global and local perspective
  • Johns Hopkins Institute for Clinical and Translational Research – Recruitment and Retention Resources
  • Trial’s Forge – Retention Resources
  • Trial Innovation Network – Recruitment and Retention Toolkit
  • Mosio for Research – Free eBook on Patient Recruitment and Retention 
• Publications
  • Improve-LTO Cohort Retention Research
    • Dinglas VD, Huang M, …, Needham DM. Personalized contact strategies and predictors of time to survey completion: analysis of two sequential randomized trials. BMC Medical Research Methodology. 2015;15:5. PubMed
    • Robinson KA, Dinglas VD, …, Needham DM. Updated systematic review identifies substantial number of retention strategies:  Using more strategies retains more study participants. Journal of Clinical Epidemiology. 2015; 68(12):1481-7. PubMed
    • Turnbull AE, …, Needham DM. Allowing physicians to choose the value of compensation for participation in a web-based survey: randomized controlled trial. Journal of Medical Internet Research. 2015;17(7):e189. PubMed
    • Abshire M, Dinglas VD, et al. Participant retention practices in longitudinal clinical research studies with high retention rates. BMC Medical Research Methodology. 2017; 17:30. PubMed
    • Dinglas VD,…, Needham DM. Long-term outcomes in ICU survivors: a systematic review of cohort retention. PROSPERO 2018.
    • Heins SE, Wozniak AW, …, Needham DM, Dinglas VD. Factors associated with missed assessments in a 2-year longitudinal study of acute respiratory distress syndrome survivors. BMC Medical Research Methodology. 2018. 18:55. PubMed
    • Eakin MN, Eckmann T, …, Needham DM. Association between participant contact attempts and reports of being bothered in a national, longitudinal cohort study of ARDS survivors. Chest. 2020;158:588-595. PubMed
    • Friedman LA*, Young DL*, …, Needham DM, Dinglas VD. Factors associated with home visits in a 5-year longitudinal study of acute respiratory distress syndrome survivors. Am J Crit Care. 2020; 29(6): 429-438.  *Contributed equally as co-first authors. PubMed
    • Nunna K, Al-Ani A, …, Needham DM, Dinglas VD. Participant retention in follow-up studies of acute respiratory failure survivors. Respiratory Care. 2020 Sep;65(9):1382-1391.  PubMed
    • Rawal H, Young DL, …, Needham DM, Dinglas VD. Participant retention in trauma intensive care unit (ICU) follow-up studies: a post-hoc analysis of a previous scoping review. Trauma Surg Acute Care Open. 2020. PubMed
    • Young DL, Al-Ani A, …, Needham DM, Dinglas VD, on behalf of the rest of the Scoping Review Team. Participant retention in follow-up studies of intensive care unit survivors – a scoping review. Aust Crit Care. 2024. In Press.
  • Other Cohort Retention Research
    • Delphi consensus on retention strategies in UK RCT groups. Kearney, et al. Trials. 2017;18(1):406. PubMed
    • Two consensus workshops – best practices to improve retention in RCTs. Brueton, et al. J Clin Epi. 2017;88:122-132. PubMed
    • Interventions to improve retention in surgical, clinical trial: a pragmatic, stakeholder-driven approach. Leighton, et al. Journal of Evidenced-Based Medicine. 2018;11(1):12-19. PubMed 
    • Tailored Strategies to Enhance Survey Response among Proxies of Deceased Patients. Gu, et al. Health Services Research. 2018; 10.1111/1475-6773.12991 Pubmed
    • A framework for ethical payment to research participants. Gelinas, et al. NEJM. 2018;378;8:776-771. PubMed
    • Qualitative study of barriers to clinical trial retention in adults with recently diagnosed type 1 diabetes. Henshall C, et al. BMJ Open 2018;8:e022353.
    • Feasibility and Acceptability of Methods to Collect Follow-Up Information From Parents 12 Months After Their Child’s Emergency Admission to Pediatric Intensive Care. Pulham RA, et al. Pediatr Crit Care Med. 2019;20: 199-207.
    • Non-randomised evaluations of strategies to increase participant retention in randomised controlled trials: a systematic review. Elfeky A, et al. Systemic Reviews. 2020; 9:224. Free Full Article
    • How do trial teams plan for retention during the design stage of the trial? A scoping review. Murphy, E, et al. Trials. 2023; 24:784. Free Full Article

If you have any questions or comments, please contact us: contact form.

This work is still in-progress. We expect many changes and updates. To receive notifications of new or updated resources from this project, please subscribe to our newsletter.

This work, created by Dale M. Needham, MD, PhD and the Johns Hopkins University Outcomes After Critical Illness & Surgery (OACIS) Group, was funded by NHLBI R24HL111895, and is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.