A Patient Registry for Cognitive Rehabilitation Research: A Strategy for Balancing Patients’ Privacy Rights With Researchers’ Need for Access

Abstract

Schwartz MF, Brecher AR, Whyte J, Klein MG. A patient registry for cognitive rehabilitation research: a strategy for balancing patients’ privacy rights with researchers’ need for access. Objective To describe a consent-based Patient Research Registry designed to improve the quality and efficiency of cognitive rehabilitation research by balancing patients’ privacy rights with researchers’ need for access to research participants. Design Description of a protocol for a Patient Research Registry. Setting Three rehabilitation hospitals. Participants Inpatients with stroke or traumatic brain injury (TBI) at the 3 participating hospitals. Interventions Not applicable. Main Outcome Measures Percentages of eligible patients with stroke or TBI who consented to be enrolled in the Registry, were subsequently contacted about a study, and ultimately participated in a study. A survey examined satisfaction with the Registry among researchers who used it for recruitment. Results After 36 months of operation, 58% of patients approached have consented to be in the Registry (N=1256). Eighty-seven percent of those later identified as potential subjects for research studies expressed interest, and 63% eventually participated. Researchers reported satisfaction with the recruitment opportunities afforded by the Registry. Conclusions The Registry succeeded in identifying eligible patients interested in participating in research studies, while safeguarding their privacy rights. We identify its strengths and limitations and characterize the type of facility that would most profit from adopting this recruitment model.