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.
Key Words
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Article info
Footnotes
Supported by the National Center for Medical Rehabilitation Research, National Institutes of Health (grant no. 1-R24HD039621).
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.
Identification
Copyright
© 2005 American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.
