Literature DB >> 15624565

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

Etienne Phipps1, Diana Harris, Natalie Brown, Tina Harralson, Adelyn Brecher, Marcia Polansky, John Whyte.   

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.
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.

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Year:  2004        PMID: 15624565     DOI: 10.1097/01.phm.0000143436.57173.e1

Source DB:  PubMed          Journal:  Am J Phys Med Rehabil        ISSN: 0894-9115            Impact factor:   2.159


  7 in total

1.  An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants.

Authors:  R L Richesson; H S Lee; D Cuthbertson; J Lloyd; K Young; J P Krischer
Journal:  Contemp Clin Trials       Date:  2008-09-07       Impact factor: 2.226

2.  Joint replacement recipients' views about health information privacy.

Authors:  Amanda L Terry; Bert M Chesworth; Robert B Bourne; Paul Stolee; Mark Speechley
Journal:  Health Expect       Date:  2013-10-01       Impact factor: 3.377

3.  Attempts to reach the oldest and frailest: recruitment, adherence, and retention of urban elderly persons to a falls reduction exercise program.

Authors:  Margaret G Stineman; Neville Strumpf; Jibby E Kurichi; Jeremy Charles; Jeane Ann Grisso; Ravishankar Jayadevappa
Journal:  Gerontologist       Date:  2011-06

4.  Recruitment of black subjects for a natural history study of intracerebral hemorrhage.

Authors:  Dorothy F Edwards; Ravi Menon; Ali Fokar; Christopher Gibbons; Jeffrey Wing; Brisa Sanchez; Chelsea S Kidwell
Journal:  J Health Care Poor Underserved       Date:  2013-02

Review 5.  Perspectives on neurological patient registries: a literature review and focus group study.

Authors:  Lawrence Korngut; Gail MacKean; Lisa Casselman; Megan Johnston; Lundy Day; Darren Lam; Diane Lorenzetti; Janet Warner; Nathalie Jetté; Tamara Pringsheim
Journal:  BMC Med Res Methodol       Date:  2013-11-09       Impact factor: 4.615

6.  Promoting Retention: African American Older Adults in a Research Volunteer Registry.

Authors:  LaToya N Hall; Lisa J Ficker; Letha A Chadiha; Carmen R Green; James S Jackson; Peter A Lichtenberg
Journal:  Gerontol Geriatr Med       Date:  2016-11-16

7.  The risk of re-identification versus the need to identify individuals in rare disease research.

Authors:  Mats G Hansson; Hanns Lochmüller; Olaf Riess; Franz Schaefer; Michael Orth; Yaffa Rubinstein; Caron Molster; Hugh Dawkins; Domenica Taruscio; Manuel Posada; Simon Woods
Journal:  Eur J Hum Genet       Date:  2016-05-25       Impact factor: 4.246

  7 in total

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