Areas of Expertise
HIPAA-compliant methods for efficient subject recruitment
NCRRN operates a consent-based research registry of individuals with stroke and traumatic brain injury who are interested in participating in cognitive rehabilitation research (Myrna Schwartz, PhD, Principal Investigator). These individuals are recruited from a variety of inpatient and outpatient programs in the Philadelphia area. This consent-based registry protects potential subjects’ privacy within the standards of HIPAA, while facilitating access to researchers who have appropriate approvals in place. The registry includes demographic information, information about brain lesions, and gross information about the types of cognitive deficits displayed by enrolled individuals. Investigators who enroll participants from the registry provide updated information about cognitive function that helps to maintain the registry’s accuracy. The operation of the registry has been described. Registry staff are able to provide guidance regarding establishing such registries elsewhere. In addition, for individuals who are approved to engage in collaborative research with NCRRN investigators, the registry is available as a source of local research participants.
Annotated Citations
- 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. Archives of Physical Medicine and Rehabilitation 86:1807-1814, 2005.
This paper describes a consent-based patient registry organized to facilitate cognitive rehabilitation research, including aspects of the policies and procedures used.(JW)
- Phipps E, Harris D, Brown N, Harralson T, Brecher A, Polansky M, Whyte J: Investigation of ethnic differences in willingness to enroll in a rehabilitation research registry: a study of the Northeast Cognitive Rehabilitation Research Network. American Journal of Physical Medicine and Rehabilitation, 83;(12):875-883, 2004.
This paper examines whether there are ethnic differences in willingness to enroll in a rehabilitation research registry and, contrary to some prior studies, finds comparable rates of enrollment for Blacks and Whites.(JW)