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Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia research

Award Number: R01AG080093
ORGANIZATION: NATIONAL INSTITUTE ON AGING
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 02/15/2023
PERIOD OF PERFORMANCE END DATE: 11/30/2027

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Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia research - It is a pivotal time for Alzheimer’s disease and related dementias (ADRD) research to harness data sharing and accelerate therapeutic discovery. Data sharing is important to advance research because it supports large data sets that are more representative of the population, increasing the ability to detect generalizable contributors to disease. Sharing data increases efficiency by allowing investigators to build upon each other’s work and prevents redundant data generation. For of these reasons, the National Institutes of Health has committed to promoting data sharing to accelerate research in the biosciences since 1997. Nevertheless, our preliminary data indicate that in ADRD individual, institutional, and system-level barriers are impeding optimal data sharing. Furthermore, the policies of institutions, publishers, and funders may be incompatible with one another, preventing or discouraging investigators from sharing data. Efforts to exponentially expand ADRD research achievement through data repositories and research consortia will fail to meet therapeutic discovery goals if investigators cannot or will not share data. To address this risk and identify effective interventions to improve the prevalence and quality of data sharing, current gaps in knowledge regarding ADRD investigators’ sharing practices, perceptions of policies, and navigation of barriers must be closed. We propose to further explore these provocative preliminary findings, collecting generalizable data to better understand ADRD investigators’ practices and perceptions of data sharing responsibilities. Such data would support development of interventions that mitigate barriers considering unique challenges associated with conducting ADRD research and the distinctive subculture of the field. Our goal is to provide ADRD investigators with tools that promote data sharing and facilitate adherence to data sharing policies, including the NIH Data Management and Sharing Policy (effective 2023). We will conduct surveys with ADRD investigators to better understand the prevalence of data sharing and withholding practices and gain clarity about barriers to data sharing. Following surveys, we will conduct in-depth interviews with a subset of subjects to collect and analyze their narrative descriptions of barriers to data sharing and how they navigate such barriers. This will provide rich understanding of investigators’ unique experiences. Finally, we will compare investigators’ reported experiences with various policies that guide ADRD scientific practices. This will include policies from journals, academic/research centers, repositories, consortia, and others. We will make recommendations of interventions which might mitigate barriers to data sharing. This study is critical to promoting optimal data sharing behaviors that are needed to advance therapeutic research in ADRD.


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: 2026 ( Subtotal = $493,021 )
2026	2026	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	000	4	12/5/2025	NON-COMPETING CONTINUATION	$443,720
2026	2026	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	001	4	2/24/2026	NON-COMPETING CONTINUATION	$49,301
														Subtotal = $493,021

Issue Date FY: 2025 ( Subtotal = $526,087 )
2025	2025	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	001	3	7/25/2025	NON-COMPETING CONTINUATION	$42,946
2025	2025	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	000	3	11/26/2024	NON-COMPETING CONTINUATION	$483,141
														Subtotal = $526,087

Issue Date FY: 2024 ( Subtotal = $622,531 )
2024	2024	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	001	2	5/2/2024	NON-COMPETING CONTINUATION	$62,252
2024	2024	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION INC	58 EDGEWOOD AVE NE	ATLANTA	GA	30303	FULTON	USA	Aging Research	000	2	11/15/2023	NON-COMPETING CONTINUATION	$560,279
														Subtotal = $622,531

Issue Date FY: 2023 ( Subtotal = $622,305 )
2023	2023	GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION, INC.	58 EDGEWOOD AVE NE 3RD FL	ATLANTA	GA	30303	FULTON	USA	Aging Research	000	1	2/6/2023	NEW	$622,305
														Subtotal = $622,305

Grand Total All Awards = $2,263,944

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Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia research

Award Number: R01AG080093

ORGANIZATION: NATIONAL INSTITUTE ON AGING

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

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

PERIOD OF PERFORMANCE START DATE: 02/15/2023

PERIOD OF PERFORMANCE END DATE: 11/30/2027

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