Abstract
In recent years, interest has piqued in utilizing and evaluating online registries to address challenges in dementia research recruitment. The Alzheimer's Comprehensive Treatment Network of Oregon and Washington (ACTNOW) is an online recruitment registry site for community members interested in dementia research news and opportunities. ACTNOW began enrolling participants in February 2016 through event registration, current research studies, and provider referrals. Researchers at OHSU were interested in a) identifying ACTNOW registrant characteristics and b) the number of ACTNOW registrants that went on to enroll in research. 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. 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. 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.
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