197 - Improving recruitment of individuals with developmental disabilities into an institutional developmental disabilities research registry

Poster Number: 197
Publication Number: 197.143

Emily J. Knight, University of Rochester Medical Center, Rochester, NY, United States; Claudia M. Perez Torres, University of Rochester Medical Center, Rochester, NY, United States; Sarah Farash, Common Ground Health, Penfield, NY, United States; Lynn Cole L. Cole, University of Rochester, PITTSFORD, NY, United States; Susan L. Hyman, University of Rochester, Rochester, NY, United States

Background: Engagement of families in clinical and translational research investigations is critical to advance knowledge and improve clinical care of individuals with developmental disabilities. To facilitate recruitment of representative samples in current and future research projects, an institutional developmental disabilities research registry was established in 2010. The registry maintains demographics and contact information voluntarily provided by families after an informed consent process and enables investigators to share research opportunities from approved research protocols.

Objective: Given slow growth of the registry, we embarked on a quality improvement initiative with a goal of increasing the enrollment rate by at least 50% over the span of three years (2019-2021).

Design/Methods: Quarterly enrollment was tracked as a process measure while iteratively testing a series of plan-do-study-act (PDSA) cycles. The process involved ongoing data collection and conversations with stakeholders to identify barriers faced by both clinical staff and families. Initial interventions focused on increasing the frequency with which providers offered enrollment opportunities to families and then moved to procedural adaptations to support family uptake in completing enrollment. Disruptions to typical workflow during the Covid-19 pandemic necessitated additional adaptations to support virtual recruitment.

Results: Provider-identified barriers included lack of time, lack of perceived knowledge about research opportunities, and difficulty implementing a procedure outside the standard clinical workflow. Family engagement was best facilitated by active recruitment measures such as providing consent during a clinic visit. Passive recruitment measures such as providing written information about the research registry in after-visit materials did not result in measurable change. Overall, new enrollment decreased to near zero during early pandemic shutdowns, but with adaptation of recruitment to allow for documentation of verbal consent, enrollment rebounded and was able to be increased 2-fold above the pre-pandemic baseline by the end of 2021 (Figure 1). Currently the registry includes over 1000 participants with most recent enrollment of 99 patients per quarter.Conclusion(s): Procedures to incorporate a streamlined consenting procedure into the standard clinical visit workflow were most effective to promote both provider and family completion of the enrollment process. Passive recruitment strategies through the electronic medical record were easy for providers to implement but minimally effective in engaging families.
knightcv_updated122021.pdf