The Alzheimer's Prevention Registry: Success metrics and lessons learned in registry member retention through online engagement campaigns: Epidemiology / Innovative methods in epidemiology (i.e., assessment methods, design, recruitment strategies, statistical methods, etc.). (7th December 2020)

• Record Type: Journal Article
• Authors: Kettenhoven, Cassandra L; High, Nellie M; Salata, Hayley; Reiman, Eric M; Tariot, Pierre N; Langbaum, Jessica B
• Is Part Of: Alzheimer's & dementia. Volume 16(2020)Supplement 10
• Page Start: n/a
• Page End: n/a
• Publication Date: 2020-12-07
• Subjects: Alzheimer's disease -- Periodicals; Alzheimer Disease -- Periodicals; Dementia -- Periodicals; Démence; Maladie d'Alzheimer; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 616.83
• DOI: 10.1002/alz.043531
• Languages: English
• ISSNs: 1552-5260

Abstract

Abstract: Background: We developed the web‐based Alzheimer's Prevention Registry (APR) program to provide resources to the AD scientific community, aiming to accelerate recruitment and enrollment into studies and to complement local efforts. Considerable efforts have been given to strengthening retention and engagement of APR members over time, regardless of whether they enroll in an AD study. Methods: Adults age 18+ are eligible to join the APR at www.endALZnow.org . At enrollment, individuals provide their name, email address, zip/postal code and year of birth; after enrollment they provide additional demographic information. Immediately after enrollment members begin receiving APR emails welcoming and orienting them to the APR. The APR sends members monthly newsletters and study opportunity announcements via email for engagement and retention purposes. We developed a 4‐part re‐engagement campaign for members who either have not opened an APR email within 6 months or fall below our engagement scoring model. If a member does not act on a re‐engagement email, then APR removes them from its email distribution list. Only "actively engaged" members remain on the APR email distribution list. Results: The APR has enrolled >347, 000 members since its launch in 2012. As of January 2020, 86, 175 people are considered "actively engaged" members of the APR. In 2019, 12 monthly e‐newsletters were sent to APR members. The average e‐newsletter open rate was 45% (compared to nonprofit healthcare industry average of 16%); and the average e‐newsletter click rate (percentage of APR members who clicked on the email in relation to those who opened/viewed the email) was 24% (compared to the industry average of 1.6%). In 2019, 36 study opportunity emails were sent to APR members with similar open and click rates. To date, approximately 54, 000 members have been added to the re‐engagement campaign, and nearly 10, 000 (18.5%) have been successfully re‐engaged. Conclusion: Deploying online engagement campaigns as a retention tool is a valuable resource for the APR. Thoughtfully engaging and re‐engaging APR members promotes increased likelihood of email opens and clicks when study opportunities are offered. Future work will examine the relationship between email engagement and responsiveness to study opportunities.