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Data Management and Coordinating Center: Rare Diseases Clinical Research Network

Award Number: U2CTR002818
ORGANIZATION: NATIONAL CENTER FOR ADVANCING TRANSLATIONAL SCIENCES
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 08/05/2019
PERIOD OF PERFORMANCE END DATE: 06/30/2030

Group Awards By:

View Award Description

Data Management and Coordinating Center: Rare Diseases Clinical Research Network - Project Summary/Abstract Rare diseases (RD) and disorders collectively affect up to 30 million Americans. RD research faces key challenges: 1) insufficient knowledge about the etiology, pathophysiology, natural history and epidemiology of the diseases; 2) inadequate or non- uniform case definition and disease classification systems that make diagnosis and epidemiologic assessment difficult; 3) insufficient understanding of the determinants of multiple phenotypes and the relationships between genetic variance and phenotypic manifestations; 4) rarity and geographic dispersion of cases that hampers both access to qualified care and participation in research; 5) a dearth of clinically proven, safe and effective treatments; and 6) inadequate private investment into RD research and treatment. The Rare Diseases Act of 2002 authorized the Office of Rare Disease Research to recommend a research agenda and promote coordination and cooperation among research programs. The Rare Diseases Clinical Research Consortia (RDCRCs) that comprise the Rare Diseases Clinical Research Network (RDCRN) advance the diagnosis, management, and treatment of RDs to enhance clinical trial readiness. The RDCRN Data Management and Coordinating Center (DMCC) must provide state-of-the-art informatics, statistical and epidemiological expertise in clinical research study design and data management in order to support the production of evidence that can support the progression of rare disease clinical research (RDCR). To achieve clinical trial readiness (CTR) throughout the RDCRN, we will continue to lead the DMCC based at Cincinnati Children’s (CCHMC) pursuing three Aims: 1) To advance the methods and practice of RDCR and promote CTR through the effort of our Clinical Research Core (CRC) and Data Management Core (DMC); 2) To maintain and enhance a leading-edge, cloud-based data ecosystem to facilitate the research performed by the RDCRCs and promote data sharing; and 3) To expand research collaboration within the RDCRN and with other stakeholders and disseminate the RDCRN research findings, promoting the RDCRN globally. The DMCC Administrative Core will maintain an efficient organization of the DMCC, support RDCRN governance and promote collaboration across the RDCRN; the Data Management Core will support the RDCRN Operational Environment will facilitate FAIR data sharing in the RDCRN Data Repository; the Clinical Research Core that will advance CTR and best practices in RDCR, and will offer training through a methodology hub; the Engagement and Dissemination Core will implement a broad RDCRN outreach and dissemination program, engage the PAGs in RDCR, and offer opportunities for career enhancement. We rely on a combination of world-class expertise, outstanding infrastructure, state-of-the-art technology and enthusiastic institutional support. We will hasten scientific discovery within the RDCRN and bring new treatments to trial, ultimately promoting health and wellness for RD patients and their families.


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: 2027 ( Subtotal = $0 )
2027	2026	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	7	10/20/2026	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2026 ( Subtotal = $6,837,569 )
2026	2026	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	003	7	9/4/2026	SUPPLEMENT FOR EXPANSION	$0
2026	2026	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	002	7	9/3/2026	SUPPLEMENT FOR EXPANSION	$1,296,000
2026	2026	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	004	7	9/11/2026	NON-COMPETING CONTINUATION	$0
2026	2026	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	7	7/7/2026	NON-COMPETING CONTINUATION	$5,541,569
2026	2023	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	5	1/28/2026	NON-COMPETING CONTINUATION	$0
														Subtotal = $6,837,569

Issue Date FY: 2025 ( Subtotal = $5,617,500 )
2025	2025	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	004	6	7/26/2025	COMPETING CONTINUATION	$0
2025	2025	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	002	6	6/23/2025	COMPETING CONTINUATION	$5,617,500
2025	2025	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	003	6	7/17/2025	COMPETING CONTINUATION	$0
2025	2023	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	5	1/17/2025	NON-COMPETING CONTINUATION	$0
2025	2023	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	5	4/1/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $5,617,500

Issue Date FY: 2024 ( Subtotal = $4,076,791 )
2024	2024	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	5	8/31/2024	SUPPLEMENT FOR EXPANSION	-$635,000
2024	2024	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	5	6/13/2024	SUPPLEMENT FOR EXPANSION	$4,711,791
														Subtotal = $4,076,791

Issue Date FY: 2023 ( Subtotal = $5,436,227 )
2023	2023	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	002	5	6/21/2023	NON-COMPETING CONTINUATION	$5,436,227
2023	2023	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	003	5	9/14/2023	NON-COMPETING CONTINUATION	$0
2023	2022	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	4	6/13/2023	NON-COMPETING CONTINUATION	$0
2023	2022	CHILDRENS HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	4	1/19/2023	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $5,436,227

Issue Date FY: 2022 ( Subtotal = $6,303,142 )
2022	2022	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	003	4	7/13/2022	NON-COMPETING CONTINUATION	$5,468,126
2022	2022	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	004	4	9/16/2022	SUPPLEMENT FOR EXPANSION	$835,016
2022	2021	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	3	11/4/2021	NON-COMPETING CONTINUATION	$0
2022	2021	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	3	1/11/2022	NON-COMPETING CONTINUATION	$0
2022	2021	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	002	3	7/13/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $6,303,142

Issue Date FY: 2021 ( Subtotal = $5,499,814 )
2021	2021	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	3	6/18/2021	NON-COMPETING CONTINUATION	$5,499,814
														Subtotal = $5,499,814

Issue Date FY: 2020 ( Subtotal = $6,344,840 )
2020	2020	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	002	2	7/10/2020	NON-COMPETING CONTINUATION	$5,534,886
2020	2020	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	1	11/28/2019	SUPPLEMENT FOR EXPANSION	$571,454
2020	2020	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	003	2	7/14/2020	NON-COMPETING CONTINUATION	$0
2020	2020	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	004	2	8/1/2020	SUPPLEMENT FOR EXPANSION	$238,500
2020	2019	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	001	1	3/31/2020	NEW	$0
														Subtotal = $6,344,840

Issue Date FY: 2019 ( Subtotal = $5,564,949 )
2019	2019	CHILDREN'S HOSPITAL MEDICAL CENTER	3333 BURNET AVE	CINCINNATI	OH	45229	HAMILTON	USA	National Center for Advancing Translational Sciences	000	1	8/5/2019	NEW	$5,564,949
														Subtotal = $5,564,949

Grand Total All Awards = $45,680,832

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Data Management and Coordinating Center: Rare Diseases Clinical Research Network

Award Number: U2CTR002818

ORGANIZATION: NATIONAL CENTER FOR ADVANCING TRANSLATIONAL SCIENCES

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

PERIOD OF PERFORMANCE START DATE: 08/05/2019

PERIOD OF PERFORMANCE END DATE: 06/30/2030

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