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INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)

Award Number: U54HL178351
ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/20/2024
PERIOD OF PERFORMANCE END DATE: 08/31/2029

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INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C) - The overarching goal of the proposed INCLUDE Clinical Cohort Coordinating Center (DS-4C), co-led by investigators at RTI International and Emory University, is to improve the health and well-being of individuals with Down syndrome (DS) by supporting the INCLUDE Project’s DS Cohort Development Program (DS-CDP). In this capacity, the DS-4C will serve as the central hub for orchestrating and integrating all components of the DS-CDP, including overseeing the development and implementation of a common protocol to guide harmonized data collection across multiple DS Cohort Research Sites (DS-CRS) in the DS-CDP and facilitating data transfer into the INCLUDE Data Coordinating Center (DCC) and Data Hub for availability to researchers. The complex structure of the DS-CDP requires the DS-4C’s expert leadership and coordination to generate an effective, integrated, unified network to achieve the goal of generating deep phenotyping data and collecting biospecimens in a large cohort of individuals with DS across the lifespan to support future research efforts to improve DS-associated co-occurring conditions. The four cores of the DS-4C (Administrative, Cohort, Outreach, and Data Management) will leverage the expertise of core staff and work collaboratively to provide administrative support to facilitate collaboration and communication across the DS-CDP; ensure seamless implementation of the protocol; implement and support broad outreach efforts; and manage the flow of data and biospecimens from the DS-CRS to the INCLUDE DCC and Data Hub and DS-Biorepository, respectively. Our specific aims are as follows: Aim 1: Implement tools and systems to foster seamless integration and operational efficiency within the DS-4C and across the DS-CDP. Aim 2: Provide expertise and resources to develop and implement the common protocol across the DS-CDP while enhancing the scientific rigor of DS-CRS studies to maximize the scientific impact of the INCLUDE Project. Aim 3: Enhance community engagement, facilitate recruitment of participants, and promote awareness of the INCLUDE Program. Aim 4: Manage the flow of data from DS-CRS into the INCLUDE DCC and Data Hub for access by the DS research community. The DS-4C will be led by Multiple Principal Investigators, Dr. Hunter at RTI and Dr. Rosser at Emory, with a collaborative history and extensive expertise in elucidating health outcomes of individuals with DS through phenotypic protocol development, biospecimen collection, multi-site recruitment efforts, and data harmonization. The proposed DS-4C is immediately and amply prepared to support its mission to develop clinically meaningful findings that positively impact those affected by DS.


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 = $0 )
2026	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Cardiovascular Diseases Research	000	2	4/1/2026	NON-COMPETING CONTINUATION	$0
2026	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Cardiovascular Diseases Research	001	2	4/1/2026	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $0

Issue Date FY: 2025 ( Subtotal = $5,956,742 )
2025	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Cardiovascular Diseases Research	001	2	9/18/2025	SUPPLEMENT FOR EXPANSION	$1,999,989
2025	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Cardiovascular Diseases Research	000	2	9/16/2025	NON-COMPETING CONTINUATION	$3,956,753
														Subtotal = $5,956,742

Issue Date FY: 2024 ( Subtotal = $1,999,508 )
2024	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Cardiovascular Diseases Research	000	1	9/20/2024	NEW	$1,999,508
														Subtotal = $1,999,508

Grand Total All Awards = $7,956,250

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INCLUDE Down Syndrome Clinical Cohort Coordinating Center (DS-4C)

Award Number: U54HL178351

ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

PERIOD OF PERFORMANCE START DATE: 09/20/2024

PERIOD OF PERFORMANCE END DATE: 08/31/2029

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