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TD‐P‐39: THE CHALLENGES OF MONITORING SUBJECT ADHERENCE TO STUDY PROTOCOLS IN TECHNOLOGY‐BASED AGING AND DEMENTIA CLINICAL RESEARCH STUDIES
Author(s) -
Bouranis Nicole,
Wall Rachel,
Marcoe Jennifer,
Beattie Zachary
Publication year - 2019
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2019.06.4350
Subject(s) - dementia , modalities , medicine , protocol (science) , clinical dementia rating , gerontology , computer science , disease , alternative medicine , pathology , social science , sociology
characteristics and b) the number of ACTNOW registrants that went on to enroll in research. Methods: We reviewed data from all participants who enrolled in ACTNOW from February 2016 to December 2018. Duplicate entries were removed. For our first aim, frequency analyses were conducted. For our second aim, we reviewed tracking records and communicated with study coordinators. Results: 339 individuals completed the initial online questionnaire to receive newsletter updates; 292 (86%) ACTNOW registrants reported interest in research participation. 191 (56%) went on to complete a prescreening survey. Ages ranged from 24-96 years old and 130 (68%) identified as female. 100 (52%) reported memory changes, 73 (38%) reported a memory loss diagnosis (34 AD, 28 MCI, 11 other dementia). 133 (70%) said they would have a study partner available. 32 (17%) reported that they completed the survey on behalf of someone else. 85 (45%) added additional comments, which included the desire to help because of personal connection to dementia, concern about time commitment, and information about their known genetic risk for Alzheimer’s disease. Although there was a protocol to monitor which registrants were enrolled in studies, it was rarely used and we were unable to address our second aim. Conclusions: ACTNOW registrants with and without memory changes are interested in participating in dementia research. Ages spanned from young adult to nonagenarians, and nearly 70% of registrants were female. Future research will include more specific questions to determine what types of studies registrants are interested in, specific demographics, and why they wanted to join a registry. Additionally, ACTNOW registrant recruitment and enrollment tracking protocols will be revised.