The COEQUAL Registry: Creating Opportunities to IncreaseHealth Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias.

ABSTRACT
As our population ages, the global crisis related to Alzheimer disease (AD) and related dementias (ADRD)
increases and yet provides the opportunity for the development of research strategies that support the needs of
our aging community. In Missouri, the projected total number of people 65 and older living with ADRD will
increase from 120,000 in 2020 to 130,000 by 2025. Health disparities in ADRD begin with acknowledging the
impact of social determinants of health, structural vulnerability, and systematic discrimination. Ethnoracial
factors, classism, systemic and systematic racism, ageism, historical mistrust of scientists, and suspicion of the
healthcare system all are factors linked to reduced recruitment, enrollment, and retention in ADRD research.
The main objective of this study is to establish a novel approach to recruiting, enrolling, and retaining under-
resourced communities into an ADRD research registry named COEQUAL (Creating Opportunities to Increase
Health Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias). We propose
using a community and patient engaged research framework (CPER) to develop and test the feasibility of a high-
yield recruitment process to create a research registry for recruitment, enrollment, and retention of under-
resourced participants into ADRD research. The study team consists of diverse researchers, community
members, and family and patient advocates partnered with Washington University School of Medicine Knight
Alzheimer’s Disease Research Center (Knight ADRC) in St. Louis, Missouri. We hypothesize that the creation
of a culturally appropriate research registry will aid in the recruitment, enrollment, and retention of diverse
participants into ADRD research, as well as those who are more representative of the medical comorbidities
experienced by community-living older adults. The Specific Aims are to:
1. Identify and enhance current practices and resources to promote high-yield recruitment, enrollment,
and retention of underrepresented participants into ADRD research.
2. Determine if NIA ADORE (Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources)
materials are accurate, accessible, and actionable for meeting best practices to increase recruitment,
enrollment, and retention for under-resourced participants in ADRD research.
3. Establish and implement the COEQUAL research registry in the St. Louis area to increase the
recruitment, enrollment, and retention of n=2000 under-resourced participants who are cognitively
unimpaired and impaired into ADRD research.
This study provides a systematic process for the enrollment of under-resourced participants into ADRD studies.
Our goal is to build a sustainable research registry that expands the existing success and efforts of the Knight
ADRC to increase diversity, equity, and inclusion in ADRD research.

Grant Number: 5R24AG074915-03
NIH Institute/Center: NIH
Principal Investigator: JOYCE BALLS-BERRY