title: Investigation of ethnic differences in willingness to enroll in a rehabilitation research registry: a study of the Northeast Cognitive Rehabilitation Research Network.
abstract: 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.
  
  
  METHODS
  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.
authors.affiliation: Albert Einstein Healthcare Network, Center for Urban Health Policy and Research, Philadelphia, Pennsylvania 19144, USA.
authors.forename: Etienne
authors.initials: E
authors.lastname: Phipps
authors.forename: Diana
authors.initials: D
authors.lastname: Harris
authors.forename: Natalie
authors.initials: N
authors.lastname: Brown
authors.forename: Tina
authors.initials: T
authors.lastname: Harralson
authors.forename: Adelyn
authors.initials: A
authors.lastname: Brecher
authors.forename: Marcia
authors.initials: M
authors.lastname: Polansky
authors.forename: John
authors.initials: J
authors.lastname: Whyte
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000523:psychology*; D000368:Aged; D001294:Attitude to Health / Q000208:ethnology*; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D018579:Patient Selection; D018907:Privacy; D012042:Registries; D012046:Rehabilitation; D014481:United States; D044465:White People / Q000523:psychology*