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Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC)

Award Number: U24NS105535
ORGANIZATION: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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Project Summary RTI proposes to serve as the Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs). In this role, we will provide the leadership and advanced infrastructure necessary to unite the CRCs into a cohesive research Network that fosters continued significant progress in our understanding of the etiology, mechanisms, and potential treatments for ME/CFS. Specifically we will (1) foster a high level of scientific rigor, transparency, and collaboration within the ME/CFS research community by providing medical and scientific leadership that will integrate the diverse strengths of the CRCs and advocacy partners; (2) facilitate broad scientific use of ME/CFS data by integrating clinical study data and other data sources into a mineable resource; (3) gain novel insights into the diagnosis, etiology, prognosis, and treatment of ME/CFS through the application of advanced biostatistics and computing techniques in the analysis of consolidated study data; (4) promote patient engagement and effective knowledge dissemination within the ME/CFS community through active partnerships and a data-driven communications strategy; (5) ensure high-quality reproducible studies through a managed study development and implementation process, the use of common data elements, and the application of consistent procedures across studies and research sites; and (6) enhance ME/CFS research efficiency, productivity, and impact by providing operational, communications, and logistical support to the ME/CFS CRCs Network. This application has specific strengths that will enhance the scientific productivity of the Network: (1) The DMCC will be led by Drs. Rick Williams and Peter Rowe, who will promote Network collaboration by providing proven unbiased leadership that is not associated with any of the CRCs. (2) RTI's scalable informatics platform incorporates cloud computing and database federation, supporting cost-effective storage and on-demand analytic capacity ideal for large-volume data of diverse types in multiple locations. (3) RTI's partnership with respected advocacy/support organization Solve ME/CFS Initiative (SMCI), will permit use of the SMCI registry to support patient recruitment, and enable a multi-tiered data-driven strategy to improve community engagement and information dissemination. (4) The DMCC Analytics Core features expertise in high-performance computing and a novel integration of qualitative and quantitative research experience that brings a patient-oriented perspective and the tools of modern data science to the rich but challenging array of data that marks the frontier of ME/CFS research.


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: 2024 ( Subtotal = $868,249 )
2024	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	7	6/28/2024	NON-COMPETING CONTINUATION	$868,249
2024	2023	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	003	6	7/1/2024	COMPETING CONTINUATION	$0
2024	2023	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	6	5/6/2024	COMPETING CONTINUATION	$99,657
2024	2022	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	5/6/2024	SUPPLEMENT FOR EXPANSION	-$99,657
														Subtotal = $868,249

Issue Date FY: 2023 ( Subtotal = $908,969 )
2023	2023	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	003	6	6/27/2023	COMPETING CONTINUATION	$0
2023	2023	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	6	6/15/2023	COMPETING CONTINUATION	$908,969
2023	2021	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	1/12/2023	NON-COMPETING CONTINUATION	$0
2023	2021	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	6/14/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $908,969

Issue Date FY: 2022 ( Subtotal = $99,999 )
2022	2022	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	7/19/2022	SUPPLEMENT FOR EXPANSION	$99,999
2022	2021	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	5/23/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $99,999

Issue Date FY: 2021 ( Subtotal = $1,123,579 )
2021	2021	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	6/17/2021	NON-COMPETING CONTINUATION	$1,123,579
2021	2020	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	4	3/30/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,123,579

Issue Date FY: 2020 ( Subtotal = $1,149,560 )
2020	2020	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	4	6/16/2020	NON-COMPETING CONTINUATION	$1,149,560
2020	2019	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	3	1/31/2020	NON-COMPETING CONTINUATION	$0
2020	2019	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	3	6/10/2020	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,149,560

Issue Date FY: 2019 ( Subtotal = $1,176,919 )
2019	2019	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	3	6/25/2019	NON-COMPETING CONTINUATION	$1,176,919
2019	2018	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	2	3/28/2019	NON-COMPETING CONTINUATION	$0
2019	2018	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	2	1/9/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,176,919

Issue Date FY: 2018 ( Subtotal = $1,193,851 )
2018	2018	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	2	9/3/2018	NON-COMPETING CONTINUATION	$1,193,851
														Subtotal = $1,193,851

Issue Date FY: 2017 ( Subtotal = $1,260,904 )
2017	2017	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	1	9/22/2017	NEW	$1,260,904
2017	2017	RESEARCH TRIANGLE INSTITUTE	3040 E CORNWALLIS RD	RESEARCH TRIANGLE PARK	NC	27709	DURHAM	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	1	9/25/2017	NEW	$0
														Subtotal = $1,260,904

Grand Total All Awards = $7,782,030

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Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC)

Award Number: U24NS105535

ORGANIZATION: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

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