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

Award Number: R01AG063954
ORGANIZATION: NATIONAL INSTITUTE ON AGING
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/01/2019
PERIOD OF PERFORMANCE END DATE: 03/21/2025

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


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = $0 )
2025	2023	BANNER HEALTH	2901 N CENTRAL AVE STE 160	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	5	3/24/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $1,842,475 )
2023	2023	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	5	7/14/2023	NON-COMPETING CONTINUATION	$1,842,475
														Subtotal = $1,842,475

Issue Date FY: 2022 ( Subtotal = $2,470,609 )
2022	2022	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	4	6/16/2022	NON-COMPETING CONTINUATION	$2,470,609
														Subtotal = $2,470,609

Issue Date FY: 2021 ( Subtotal = $1,792,578 )
2021	2021	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	3	8/24/2021	NON-COMPETING CONTINUATION	$1,404,629
2021	2021	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	001	3	8/27/2021	SUPPLEMENT FOR EXPANSION	$387,949
														Subtotal = $1,792,578

Issue Date FY: 2020 ( Subtotal = $2,004,896 )
2020	2020	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	003	2	9/10/2020	SUPPLEMENT FOR EXPANSION	$387,949
2020	2020	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	002	2	6/15/2020	NON-COMPETING CONTINUATION	$1,616,947
2020	2019	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	001	1	4/10/2020	NEW	$0
2020	2019	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	1	1/23/2020	NEW	$0
														Subtotal = $2,004,896

Issue Date FY: 2019 ( Subtotal = $1,458,714 )
2019	2019	BANNER HEALTH	2901 N CENTRAL AVE	PHOENIX	AZ	85012	MARICOPA	USA	Aging Research	000	1	8/31/2019	NEW	$1,458,714
														Subtotal = $1,458,714

Grand Total All Awards = $9,569,272

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

Award Number: R01AG063954

ORGANIZATION: NATIONAL INSTITUTE ON AGING

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/01/2019

PERIOD OF PERFORMANCE END DATE: 03/21/2025

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