Resources to Improve Research Subject Retention

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The NIH-funded “Improve Long-Term Outcomes” (www.improveLTO.com) research infrastructure project (R24HL111895) has created practical tools for maximizing participant retention in longitudinal research studies. These FREE resources include adaptable tools, templates, and operations manuals to minimize loss to follow-up of research participants, including an interactive searchable database of >600 participant retention strategies. These resources were informed by a systematic review, qualitative research regarding best practices for cohort retention, and practical experience of the Johns Hopkins Outcomes After Critical Illness and Surgery research group (OACIS,www.hopkinsmedicine.org/OACIS). The direct link to these FREE cohort retention tools is: www.improvelto.com/cohort-retention-tools/.

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In addition to cohort retention tools, www.improveLTO.com has a library of information on many survey instruments and tests that have been used in evaluating research participants during follow-up (www.improvelto.com/instruments). For example, each information sheet contains detail regarding any licensing/permission requirement, number of items for surveys, and average time needed to administer. 

 

Follow-up studies evaluating functional outcomes can be complicated due to differential mortality in treatment groups. In addition, patients who survive may have missed visits/assessments causing missing data for the long-term outcomes. To deal with these issues, the Improving Long-Term Outcomes project has a free, downloadable standalone statistical application to assist with appropriate statistical analyses (www.improvelto.com/stats-tools/).

 

Lastly, as research fields continue to expand and advance, there is greater focus on standardizing the evaluation of research participants by selecting a minimum set of outcomes and related measurement instruments (Core Outcome Set [COS] and Core Outcome Measurement Set [COMS], respectively) that will always be evaluated in that field. To assist with this endeavor, the team has shared tools and templates used in their COS/COMS development, along with other relevant citations and links to other resources (www.improvelto.com/cos-resources/).

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These resources are available as part of the Recruitment Innovation Center (RIC) which provides evidenced based recruitment and retention methods, tools, and strategies. The RIC is a part of the larger Trial Innovation Network and is federally supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH). To learn more about additional resources to support recruitment and retention of research participants, contact the iTHRIV Research Concierge Services team at ithrivadmin@uvahealth.org.