Studies from University of California Further Understanding of Alzheimer Disease (Attitudes toward Potential Participant Registries)

By a News Reporter-Staff News Editor at Obesity, Fitness & Wellness Week -- New research on Neurodegenerative Diseases and Conditions - Alzheimer Disease is the subject of a report. According to news reporting out of Irvine, California, by NewsRx editors, research stated, "Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier."

Our news journalists obtained a quote from the research from the University of California, "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%; p=0.46). 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."

According to the news editors, the research concluded: "Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations."

For more information on this research see: Attitudes toward Potential Participant Registries. Journal of Alzheimer's Disease, 2017;():. Journal of Alzheimer's Disease can be contacted at: IOS Press, Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands (see also Neurodegenerative Diseases and Conditions - Alzheimer Disease).

Our news journalists report that additional information may be obtained by contacting J.D. Grill, Institute for Memory Impairments and Neurological Disorders and Alzheimer's Disease Research Center, University of California, Irvine, CA, United States. Additional authors for this research include A. Holbrook, A. Pierce, D. Hoang and D.L Gillen.

Publisher contact information for the Journal of Alzheimer's Disease is: IOS Press, Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands.

Keywords for this news article include: Irvine, California, United States, Alzheimer Disease, North and Central America, Neurodegenerative Diseases and Conditions.

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