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 – How to develop creative strategies in patient retention for clinical trails
- 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
- Dinglas VD,…, Needham DM. Long-term outcomes in ICU survivors: a systematic review of cohort retention. PROSPERO 2018.
- 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.
- Two consensus workshops – best practices to improve retention in RCTs. Brueton, et al. J Clin Epi. 2017;88:122-132. 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.
- Delphi consensus on retention strategies in UK RCT groups. Kearney, et al. Trials. 2017;18(1):406. PubMed
- A framework for ethical payment to research participants. Gelinas, et al. NEJM. 2018;378;8:776-771. 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
- 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
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.
