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. 2020;7(4):242-250.
doi: 10.14283/jpad.2020.31.

The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies

J B Langbaum  1 , N High, J Nichols, C Kettenhoven, E M Reiman, P N Tariot
Affiliations

The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies

J B Langbaum et al. J Prev Alzheimers Dis. 2020.

Abstract

Background: Recruitment for Alzheimer's disease (AD)-focused studies, particularly prevention studies, is challenging due to the public's lack of awareness about study opportunities coupled with studies' inclusion and exclusion criteria, resulting in a high screen fail rate.

Objectives: To develop an internet-based participant recruitment registry for efficiently and effectively raising awareness about AD-focused study opportunities and connecting potentially eligible volunteers to studies in their communities.

Methods: Individuals age 18 and older are eligible to join the Alzheimer's Prevention Registry (APR). Individuals provide first and last name, year of birth, country, and zip/postal code to join the APR; for questions regarding race, ethnicity, sex, family history of AD or other dementia, and diagnosis of cognitive impairment, individuals have the option to select "prefer not to answer." The APR website maintains a list of recruiting studies and contacts members who have opted in by email when new studies are available for enrollment.

Results: As of December 1, 2019, 346,661 individuals had joined the APR. Members had a mean age of 63.3 (SD 11.7) years and were predominately women (75%). 94% were cognitively unimpaired, 50% reported a family history of AD or other dementia, and of those who provided race, 76% were white. 39% joined the APR as a result of a paid social media advertisement. To date, the APR helped recruit for 82 studies.

Conclusions: The APR is a large, internet-based participant recruitment registry designed to raise awareness about AD prevention research and connect members with enrolling studies in their communities. It has demonstrated the ability to recruit and engage a large number of highly motivated members and assist researchers in meeting their recruitment goals. Future publications will report on the effectiveness of APR for accelerating recruitment and enrollment into AD-focused studies.

Keywords: Alzheimer’s disease; Registry; recruitment.

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Conflict of interest statement

Jessica Langbaum, Nellie High, Cassandra Kettenhoven, Eric Reiman and Pierre Tariot: full employees of Banner Health. Jodie Nichols: no conflicts of interest.

Figures

Figure 1:
Figure 1:. Original Alzheimer’s Prevention Registry (APR) Website Landing Page and Enrollment Form (May 2012)
Website visitors clicked “Learn More” on the landing page, which directed them to a second page with the enrollment form. The enrollment form is shown in two sections (via arrow) due to space constraints, however, on a computer screen, it was one long form presented on the website.
Figure 2:
Figure 2:. First Redesign of the Alzheimer’s Prevention Registry (APR) website (July 2013)
Website visitors entered their email address on the landing page to join the APR. Fields for the remaining contact and demographic information were presented on a subsequent page.
Figure 3.
Figure 3.. A/B Tests of the Alzheimer’s Prevention Registry (APR) Website
A/B tests measured which website version (current/existing version was the “control”; alternative version was the “variation”) is more effective for the intended outcome.
See this image and copyright information in PMC

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