Investigation of ethnic differences in willingness to enroll in a rehabilitation research registry: a study of the Northeast Cognitive Rehabilitation Research Network.

Objective: To investigate differences between African American and white respondents in willingness to enroll in a rehabilitation research registry for future research and to determine if reasons for consenting and refusing to enroll differ by ethnicity.

Design: Inpatient recruitment results from 739 African American and white respondents in which patients were admitted to a rehabilitation hospital with a diagnosis of stroke or traumatic brain injury.

Results: A similar proportion of African American and white respondents (both patients and surrogates) consented to enroll in the registry (72% of all African American respondents vs. 68% of all white respondents). African Americans and whites provided similar reasons for consenting and refusing to enroll. Demographic variables associated with consent were: higher education, younger age, and facility. The odds of consenting to enroll in the registry were 5 times as high for those who thought they had a great deal to gain from enrollment compared with those who thought they had less to gain and were nearly 2 times as high for those who reported little concern about privacy compared with those who were more concerned about privacy.

Conclusions: Ethnicity was not found to be a predictor of willingness to enroll in a study registry. A greater belief of gain and less concern over privacy were associated with willingness to enroll, even after controlling for age, education, facility, and ethnic group.