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Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RDCRN) (U54 Clinical Trial Optional)

Award Number: U54HD061221
ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RDCRN) (U54 Clinical Trial Optional) - OVERALL ABSTRACT Urea Cycle Disorders (UCD) comprise a group of rare inborn errors of metabolism that historically have been associated with a rate of mortality and morbidity that once was considered intractably high. The Rare Diseases Clinical Research Consortium in Urea Cycle Disorders (UCDC) has enjoyed success in attenuating and even reversing this lamentable situation. The UCDC focuses on the 8 related disorders that involve deficiencies in one of the 6 enzymes and 2 membrane transporters essential for urea biosynthesis: N-acetylglutamate synthase deficiency; Carbamyl phosphate synthase I deficiency; Ornithine transcarbamylase deficiency; Argininosuccinate synthase deficiency; Argininosuccinatelyase deficiency; Arginase deficiency (Argininemia); Hyperornithinemia, hyperammonemia, homocitrullinuria (HHH) syndrome; and Citrullinemia type II. Over the past 15 years the Consortium has developed into an international network of 16 academic centers (13 in the U.S., 1 in Canada, and 2 in Europe) that provides state-of-the-art care and conducts innovative clinical research in UCD. In the next grant cycle the UCDC proposes four specific aims: 1) To advance our understanding of the pathophysiology of UCD through collaborative clinical research that includes three projects: a) a longitudinal observational, “natural history” study of affected individuals with an expanded focus on mining the wealth of coded clinical data to uncover new morbidities in UCD; b) a clinical study to understand the consequences of seizure activity and define potential neuroprotective treatment approaches during hyperammonemic crises; and c) an observational study of the development of liver dysfunction and disorder over time in individuals with UCD, including defining biomarkers of hepatic fibrosis. 2) To nurture the development of the next generation of rare disease researchers by training this still- nascent cadre to become expert in the performance of team science clinical investigation of rare genetic disorders, especially UCD. 3) To identify promising new approaches to UCD care by performing pilot/feasibility clinical research projects that will deploy state-of-the-art methodologies and technology to monitor and track patients in the clinic and with deployment of technologies to enable remote observation. 4) To disseminate knowledge and improve the care of UCD by providing ready access to information for all individuals whose efforts will impact outcome, including researchers (both basic and clinical), physicians, and allied healthcare professionals by professional meetings and listservs, our website, podcasts and webinars. Of importance to the Consortium also will be dissemination of information to patients, families, representatives in government and the lay public. The Consortium will execute this informational role through the UCDC’s annual newsletter, public website, presentations at conferences, and publications.


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: 2025 ( Subtotal = $0 )
2025	2023	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	20	1/8/2025	NON-COMPETING CONTINUATION	$0
2025	2023	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	20	12/2/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $0 )
2024	2023	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	20	4/2/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $1,496,150 )
2023	2023	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	20	7/17/2023	NON-COMPETING CONTINUATION	$1,496,150
2023	2022	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	19	4/20/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,496,150

Issue Date FY: 2022 ( Subtotal = $1,578,014 )
2022	2022	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	002	19	7/21/2022	NON-COMPETING CONTINUATION	$1,578,014
2022	2021	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	18	6/9/2022	NON-COMPETING CONTINUATION	$0
2022	2021	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	18	1/6/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,578,014

Issue Date FY: 2021 ( Subtotal = $1,609,500 )
2021	2021	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	18	8/5/2021	NON-COMPETING CONTINUATION	$1,609,500
														Subtotal = $1,609,500

Issue Date FY: 2020 ( Subtotal = $1,849,559 )
2020	2020	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	004	17	8/17/2020	NON-COMPETING CONTINUATION	$1,627,175
2020	2020	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	005	17	8/18/2020	SUPPLEMENT FOR EXPANSION	$222,384
2020	2019	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	002	16	4/11/2020	COMPETING CONTINUATION	$233,275
2020	2019	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	003	16	6/25/2020	COMPETING CONTINUATION	$0
2020	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	15	4/11/2020	NON-COMPETING CONTINUATION	-$144,507
2020	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	15	4/11/2020	SUPPLEMENT FOR EXPANSION	-$88,768
														Subtotal = $1,849,559

Issue Date FY: 2019 ( Subtotal = $1,887,573 )
2019	2019	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	004	16	9/16/2019	COMPETING CONTINUATION	$1,887,573
2019	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	15	5/2/2019	NON-COMPETING CONTINUATION	$0
2019	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	003	15	9/11/2019	SUPPLEMENT FOR EXPANSION	$0
2019	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	002	15	9/10/2019	NON-COMPETING CONTINUATION	$0
2019	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	15	1/28/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,887,573

Issue Date FY: 2018 ( Subtotal = $1,338,768 )
2018	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	15	7/30/2018	NON-COMPETING CONTINUATION	$1,250,000
2018	2018	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	15	8/3/2018	SUPPLEMENT FOR EXPANSION	$88,768
														Subtotal = $1,338,768

Issue Date FY: 2017 ( Subtotal = $1,250,000 )
2017	2017	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVE NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	14	7/31/2017	NON-COMPETING CONTINUATION	$1,250,000
														Subtotal = $1,250,000

Issue Date FY: 2016 ( Subtotal = $1,250,000 )
2016	2016	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	13	8/1/2016	NON-COMPETING CONTINUATION	$1,250,000
														Subtotal = $1,250,000

Issue Date FY: 2015 ( Subtotal = $1,250,000 )
2015	2015	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	12	7/21/2015	NON-COMPETING CONTINUATION	$1,250,000
														Subtotal = $1,250,000

Issue Date FY: 2014 ( Subtotal = $1,250,000 )
2014	2014	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	002	11	8/22/2014	COMPETING CONTINUATION	$1,250,000
2014	2013	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	10	8/5/2014	NON-COMPETING CONTINUATION	$0
2014	2013	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	10	8/18/2014	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,250,000

Issue Date FY: 2013 ( Subtotal = $1,143,025 )
2013	2013	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	10	8/21/2013	NON-COMPETING CONTINUATION	$1,143,025
														Subtotal = $1,143,025

Issue Date FY: 2012 ( Subtotal = $1,204,178 )
2012	2012	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	001	9	8/27/2012	SUPPLEMENT FOR EXPANSION	$199,000
2012	2012	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	9	8/22/2012	NON-COMPETING CONTINUATION	$1,005,178
														Subtotal = $1,204,178

Issue Date FY: 2011 ( Subtotal = $1,022,813 )
2011	2011	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	8	8/26/2011	NON-COMPETING CONTINUATION	$1,022,813
														Subtotal = $1,022,813

Issue Date FY: 2010 ( Subtotal = $1,077,437 )
2010	2010	CHILDREN'S RESEARCH INSTITUTE	111 MICHIGAN AVENUE, NW	WASHINGTON	DC	20010	DISTRICT OF COLUMBIA	USA	Child Health and Human Development Extramural Research	000	7	9/13/2010	NON-COMPETING CONTINUATION	$1,077,437
														Subtotal = $1,077,437

Issue Date FY: 2009 ( Subtotal = $1,549,998 ) (Continued on the next page)
Grand Total All Awards = $20,757,015

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Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RDCRN) (U54 Clinical Trial Optional)

Award Number: U54HD061221

ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

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