# Establishing the science behind Alzheimer's recruitment registries: opportunities for increasing diversity and accelerating enrollment into trials

> **NIH NIH R01** · BANNER HEALTH · 2023 · $1,842,475

## Abstract

Project Summary/Abstract
The suffering caused by Alzheimer’s disease (AD) remains one of the greatest unmet medical needs of our
times. With a heightened sense of urgency, numerous AD prevention trials are being launched, requiring an
unprecedented number of healthy older adults to be screened to identify the thousands eligible to participate.
Recognizing this obstacle, initiatives such as the National Plan to Address AD call for greater attention to 1)
increasing enrollment into clinical trials and other clinical research, and 2) monitoring and identifying strategies
to increase enrollment of racial and ethnic minorities in AD studies. An outgrowth of the National Plan is the
National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research which recognizes
the requirement for developing and understanding a new “science of recruitment.” Recently, multiple AD
recruitment registries have been developed, including but not limited to the Alzheimer’s Prevention Registry,
GeneMatch, the Brain Health Registry, and GenePool. Although each differs in what they require of participants
in terms of information and time commitment (herein referred to as “tiers of participation”), the registries share a
common goal of accelerating enrollment into AD studies. However, despite enrolling >450,000 across all four
registries, enrollees in each registry are predominantly female and non-Hispanic / white, thereby perpetuating
the lack of diversity among AD prevention trial participants. The objective of this proposal is to understand how
to effectively communicate the importance of AD prevention trial participation to men and minorities. This
proposal will accomplish this objective via the following aims: 1) using semi-structured interviews and a nationally
representative survey to identify the relevant psychosocial determinants (attitudes, norms, efficacy/control) for
each “tier of participation” and understanding how they vary by race/ethnicity and gender; 2) develop and test
evidence-based messaging to join each registry via iterative concept testing via focus groups enriched for men
and minorities and online message testing to assess persuasiveness, and 3) deploy evidence-based messages
into our real-word testing environment, measuring their impact on enrollment of men and minorities into each
registry and enrollees’ subsequent willingness to participate in AD prevention trials. We hypothesize that
enrollment of men and minorities into each registry will increase, with positive downstream effects on diversity
among AD prevention trial participants.

## Key facts

- **NIH application ID:** 10647889
- **Project number:** 5R01AG063954-05
- **Recipient organization:** BANNER HEALTH
- **Principal Investigator:** Amy Bleakley
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2023
- **Award amount:** $1,842,475
- **Award type:** 5
- **Project period:** 2019-09-01 → 2026-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10647889

## Citation

> US National Institutes of Health, RePORTER application 10647889, Establishing the science behind Alzheimer's recruitment registries: opportunities for increasing diversity and accelerating enrollment into trials (5R01AG063954-05). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10647889. Licensed CC0.

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