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URMC / Clinical & Translational Science Institute / Stories / March 2020 / Engaging Patients in Person Nearly Triples Research Registry Enrollment

Engaging Patients in Person Nearly Triples Research Registry Enrollment

Participant recruitment can be a tremendous challenge for clinical research, but a recent pilot program nearly tripled enrollment in a local clinical research registry - simply by asking patients if they would like to join in person.

Funded in part by the University of Rochester Clinical and Translational Science Institute (UR CTSI), the three-month pilot program aimed to improve enrollment in two research participant recruitment registries: the University of Rochester Research Participant Registry (URRPR) and the national ResearchMatch.org. These registries are composed of people willing to be contacted to take part in future health-research or clinical studies.

Utilizing the university’s Emergency Department Research Associate (EDRA) Program, research associates approached people in the Strong Memorial Hospital emergency department to ask if they would be interested in registering for future studies. During the pilot program from December 2017 to February 2018, 73 percent of those approached agreed to register for one or both of the registries – nearly three times as many registrants as signed up during the same three-month period the previous year.

The direct approach also helped increase diversity among registrants. The proportion of Hispanic participants was nearly double that of pre-pilot enrollees, and more men were represented in the pilot as well.

Past recruitment efforts were more passive, ranging from broadcast and print advertising, to posters at primary-care clinics and community events. UR CTSI’s Research Advisory Committee discussed strategies for boosting study-participant enrollment. The group decided to try the direct approach using ED research associates, which had been successful for other University research groups.

“Recruitment is the number-one barrier to completing research and clinical studies, as approximately 25 percent of national studies fail to attract any participants and about 50 percent of national studies are under-enrolled,” said Carrie Dykes, Ph.D., director of research services, UR CTSI. “From this pilot, we learned that patients are really interested in participating in research, they just have to be asked.”

Dykes added that UR CTSI has continued to utilize the direct-ask approach in the ED since the end of the pilot program. Since March 2018, UR CTSI has grown the registry from 2,000 enrollees to more than 8,000 people, with an average of 250 to 300 new registrants every month.

UR CTSI will soon begin another pilot project based on the success of the three-month pilot in an attempt to recruit more children for studies, which continues to be an under-enrolled population in the registry.

A report detailing the pilot program’s results was published recently in Clinical and Translational Science. In addition to Carrie Dykes, report authors are EDRA Supervisor Joseph Glick, Beau W. Abar, Ph.D. and Ann M. Dozier, Ph.D.

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This project as funded by the University of Rochester Clinical and Translational Science Institute (grants UL1 TR002001, KL2 TR001999, and TL1 TR002000) from the National Center for Advancing Translational Sciences (NCATS), a component of the National Institutes of Health (NIH).

Do you need help recruiting participants for a study? The UR CTSI can help! Peruse our recruitment resources and reach out for a recruitment consultation (ideally in the planning stages of your study). 

Susanne Pritchard Pallo | 3/4/2020

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