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.


METHODS
Description of a protocol for a Patient Research Registry.


METHODS
Three rehabilitation hospitals.


METHODS
Inpatients with stroke or traumatic brain injury (TBI) at the 3 participating hospitals.


METHODS
Not applicable.


METHODS
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.
Schwartz
Myrna F
MF
Moss Rehabilitation Research Institute, Philadelphia, PA; Thomas Jefferson University, Philadelphia, PA 19141, USA. mschwartz@einstein.edu
Brecher
Adelyn R
AR
Whyte
John
J
Klein
Mary G
MG
D001930:Brain Injuries / Q000150:complications; D003072:Cognition Disorders / Q000209:etiology / Q000534:rehabilitation*; D003219:Confidentiality; D005260:Female; D006302:Health Services Research; D006801:Humans; D007258:Informed Consent; D015601:Injury Severity Score; D008297:Male; D020380:Needs Assessment; D028701:Patient Rights; D012042:Registries; D012047:Rehabilitation Centers; D012680:Sensitivity and Specificity; D020521:Stroke / Q000150:complications; D014481:United States