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Coordinating Center for the Undiagnosed Disease Network Phase II

Award Number: U01HG007530
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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PROJECT SUMMARY In pursuit of a diagnosis, many patients undergo countless tests and procedures in hopes of finding answers. When these fail to yield diagnoses, patients are left in a state of uncertainty, faced with the possibility of never knowing the cause of their symptoms. Finding a diagnosis and other patients affected with the same, or similar, condition can reduce or eliminate this uncertainty and end the diagnostic odyssey. In our current healthcare system, it can take years before patients with rare conditions and rare presentations of common conditions receive a diagnosis- an amount of time that many of these patients simply do not have. As the Coordinating Center for the Undiagnosed Diseases Network (UDN), Harvard Medical School will support the integrated network of 8-10 clinical sites and multiple core laboratories striving to improve the level of diagnosis and care for patients with undiagnosed conditions and facilitate research into their etiologies. We will do this by leveraging our collective expertise and experience in managing multi-site studies, trans-institutional data sharing, data curation and analysis, bioinformatics, biostatistics, and translational research. In so doing, we will accomplish five aims: (1) Enhance UDN core operational processes, (2) Develop consensus across the UDN for evaluation and diagnostic approaches, (3) Follow the UDN participant beyond the diagnostic evaluation, (4) Expand the transactional and analytical intelligence applied to UDN data, and (5) Integrate a larger set of scientific and clinical care partners into the UDN.


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	2021	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	8	11/1/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $0 )
2023	2022	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	8	6/12/2023	SUPPLEMENT FOR EXPANSION	$0
2023	2021	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	8	6/12/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $2,199,897 )
2022	2022	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	8	6/29/2022	SUPPLEMENT FOR EXPANSION	$2,199,897
2022	2021	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	8	6/28/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $2,199,897

Issue Date FY: 2021 ( Subtotal = $2,498,733 )
2021	2021	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	8	9/23/2021	NON-COMPETING CONTINUATION	$0
2021	2021	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	8	6/11/2021	NON-COMPETING CONTINUATION	$2,498,733
2021	2020	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	7	10/21/2020	NON-COMPETING CONTINUATION	$0
														Subtotal = $2,498,733

Issue Date FY: 2020 ( Subtotal = $3,639,639 )
2020	2020	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	7	7/17/2020	SUPPLEMENT FOR EXPANSION	$140,902
2020	2020	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	7	7/15/2020	NON-COMPETING CONTINUATION	$3,498,737
2020	2019	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	000	6	12/18/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $3,639,639

Issue Date FY: 2019 ( Subtotal = $3,998,739 )
2019	2019	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	005	6	6/26/2019	NON-COMPETING CONTINUATION	$3,998,739
2019	2018	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	004	5	3/18/2019	COMPETING CONTINUATION	$0
2019	2018	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	003	5	3/4/2019	COMPETING CONTINUATION	-$208,607
2019	2018	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	001	5	12/28/2018	COMPETING CONTINUATION	$1,684,309
2019	2017	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	4	3/4/2019	SUPPLEMENT FOR EXPANSION	$208,607
2019	2017	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	4	12/28/2018	SUPPLEMENT FOR EXPANSION	-$1,684,309
														Subtotal = $3,998,739

Issue Date FY: 2018 ( Subtotal = $4,000,000 )
2018	2018	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Human Genome Research	000	5	9/22/2018	COMPETING CONTINUATION	$4,000,000
														Subtotal = $4,000,000

Issue Date FY: 2017 ( Subtotal = $6,087,541 )
2017	2017	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	004	4	9/15/2017	SUPPLEMENT FOR EXPANSION	$1,782,577
2017	2017	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	003	4	9/14/2017	SUPPLEMENT FOR EXPANSION	$1,900,000
2017	2017	PRESIDENT AND FELLOWS OF HARVARD COLLEGE	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	4	9/14/2017	NON-COMPETING CONTINUATION	$0
2017	2017	HARVARD COLLEGE, PRESIDENT & FELLOWS OF	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	4	1/30/2017	NON-COMPETING CONTINUATION	$480,994
2017	2017	HARVARD COLLEGE, PRESIDENT & FELLOWS OF	25 SHATTUCK ST	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	4	11/22/2016	NON-COMPETING CONTINUATION	$1,923,970
														Subtotal = $6,087,541

Issue Date FY: 2016 ( Subtotal = $2,738,700 )
2016	2016	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	3	12/4/2015	NON-COMPETING CONTINUATION	$2,166,934
2016	2016	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	3	9/22/2016	SUPPLEMENT FOR EXPANSION	$330,995
2016	2016	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	3	3/24/2016	NON-COMPETING CONTINUATION	$240,771
														Subtotal = $2,738,700

Issue Date FY: 2015 ( Subtotal = $2,590,320 )
2015	2015	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	002	2	7/10/2015	SUPPLEMENT FOR EXPANSION	$120,000
2015	2015	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	2	2/20/2015	NON-COMPETING CONTINUATION	$247,033
2015	2015	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	2	12/10/2014	NON-COMPETING CONTINUATION	$2,223,287
														Subtotal = $2,590,320

Issue Date FY: 2014 ( Subtotal = $2,442,037 )
2014	2014	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	001	1	9/17/2014	SUPPLEMENT FOR EXPANSION	$943,589
2014	2014	HARVARD UNIVERSITY MEDICAL SCHOOL	643 HUNTINGTON AVENUE	BOSTON	MA	02115	SUFFOLK	USA	Trans-NIH Research Support	000	1	12/19/2013	NEW	$1,498,448
														Subtotal = $2,442,037

Grand Total All Awards = $30,195,606

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Coordinating Center for the Undiagnosed Disease Network Phase II

Award Number: U01HG007530

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

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