Include down syndrome clinical cohort coordinating center (DS-4C)

Active Cooperative Agreement Awarded Last action

Award ID
U54HL178351
Recipient
Awarding agency
Obligated
$23,725,743

Award facts

Assistance listing
93.310 Trans-NIH Research Support
Completion date 42% complete
Funding agency
Office of the Director National Institutes of Health, Department of Health and Human Services
Place of performance
North Carolina, USA

Award details come from USAspending.gov.

Description

Abstract
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, diverse cohort of individuals with DS across the lifespan to support future research efforts to improve DS-associated CO-morbidities. 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 inclusive outreach efforts to facilitate inclusion and representation in recruitment; 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 team members from typically underrepresented groups, advance health equity goals, 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.

Transactions

Action Obligated Date
Amendment $3,856,009
Amendment $0
Amendment Include down syndrome clinical cohort coordinating center (DS-4C) - the overarching goal of the proposed include clinical cohort coordinating center (DS-4C),… $0
Amendment $0
Amendment $0
Amendment $1,999,989
Amendment $1,999,989
Amendment $1,999,989
Amendment $3,956,753
Amendment $3,956,753
Amendment Include down syndrome clinical cohort coordinating center (DS-4C) - the overarching goal of the proposed include clinical cohort coordinating center (DS-4C),… $3,956,753
Original award $1,999,508
Show all 12

Subawards

Subrecipient Amount Awarded
NCS Pearson, Inc. PO RTI1004628 $53,588
Itamar Medical, Inc. PO RTI1004296 $164,466
NOX Health Group, Inc. PO RTI1004118 $738,869
University Of Utah $34,456.00 $34,456
Emory University 1-312-0219767 Initial Award $461,008

Quick answers

Who received award U54HL178351?

U54HL178351 was awarded to Research Triangle Institute by National Heart Lung and Blood Institute (National Institutes of Health) on September 20, 2024.

How much is award U54HL178351 worth?

$23,725,743 has been obligated on U54HL178351.

Which agency awarded U54HL178351?

National Heart Lung and Blood Institute (National Institutes of Health) awarded U54HL178351, with funding from Office of the Director (National Institutes of Health).

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