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Home > Attitudes toward Potential Participant Registries.

TitleAttitudes toward Potential Participant Registries.
Publication TypeJournal Article
Year of Publication2017
AuthorsGrill, JD, Holbrook, A, Pierce, A, Hoang, D, Gillen, DL
JournalJ Alzheimers Dis
Volume56
Issue3
Pagination939-946
Date Published2017
ISSN1875-8908
Abstract

Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67%) individuals participated in the study. Most (78%, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26%, CI: 0.16, 0.36) or through email (38%, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28% versus 30%; pā€Š=ā€Š0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.

DOI10.3233/JAD-160873
Alternate JournalJ. Alzheimers Dis.
PubMed ID28106553
PubMed Central IDPMC5533604
Grant ListKL2 TR000147 / TR / NCATS NIH HHS / United States
P50 AG016573 / AG / NIA NIH HHS / United States
UL1 TR000153 / TR / NCATS NIH HHS / United States
UL1 TR001414 / TR / NCATS NIH HHS / United States
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