Diagnosing the unknown for care and advancing science (ducas)

Active Cooperative Agreement Awarded Last action

Award ID
U2CNS132415
Recipient
Awarding agency
Obligated
$59,366,899

Award facts

Completion date 71% complete
Place of performance
Mission Hill, MA 02120, USA

Award details come from USAspending.gov.

Description

Abstract
In our current healthcare system, IT often takes years before patients with rare conditions and rare presentations of common conditions receive a diagnosis. In 2013, the national institutes of health supported the creation of the undiagnosed diseases network (UDN) to address the needs of these patients, to facilitate the diagnostic process for those with undiagnosed conditions and generate new knowledge about underlying mechanisms of disease. The UDN was successful in solving medical mysteries, shortening diagnostic odysseys, and contributing to biomedical research discovery. In order to serve more patients, the UDN process must be scaled and integrated into broader healthcare and research ecosystems. As the data management coordinating center (dmcc) for a network of diagnostic centers of excellence, harvard medical school will leverage experience in the UDN to create sustainable, nationally scaled infrastructure to support diagnosis, research, and care for those who are undiagnosed. This will be accomplished by bringing together experts in trans-institutional data sharing, data analysis, clinical care, bioinformatics, novel diagnostics, and translational research and creating three dmcc cores - administrative, data management, and clinical research support - to address unmet needs of the undiagnosed. The administrative core will unite the dmcc and support activities of all three cores. Together, the dmcc cores will accomplish four aims: 1) scale up UDN throughput by at least an order of magnitude to meet a pressing national need, 2) leverage partnerships for sustainable coordination of diagnostic processes to increase patient autonomy while advancing opportunities for investigative science, 3) maximize data mobility, interpretability, and shareability, and 4) provide analytic service and data stewardship through the data management core and clinical research support cores led by experts in genomics and AI teaming with clinicians and researchers.

Transactions

Action Obligated Date
Amendment Diagnosing the unknown for care and advancing science (ducas) - the undiagnosed diseases network (UDN) has made significant progress in diagnosing rare and… $2,700,000
Amendment $1,000,000
Amendment Diagnosing the unknown for care and advancing science (ducas) - the undiagnosed diseases network (UDN) has made significant progress in diagnosing rare and… $1,000,000
Amendment $0
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Amendment Diagnosing the unknown for care and advancing science (ducas) - the undiagnosed diseases network (UDN) has made significant progress in diagnosing rare and… $0
Amendment $2,457,018
Amendment $2,457,018
Amendment -$75,000
Amendment Diagnosing the unknown for care and advancing science (ducas) - the undiagnosed diseases network (UDN) has made significant progress in diagnosing rare and… -$67,500
Amendment $75,000
Amendment $500,000
Amendment $500,000
Amendment Diagnosing the unknown for care and advancing science (ducas) - the undiagnosed diseases network (UDN) has made significant progress in diagnosing rare and… $75,000
Amendment $116,258
Amendment $150,000
Amendment $150,000
Amendment $150,000
Amendment $150,000
Amendment $32,479
Amendment $176,960
Amendment $176,960
Amendment $500,000
Amendment $500,000
Amendment $500,000
Amendment -$1,099,240
Amendment -$25,000
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Amendment $4,173,694
Amendment $4,173,694
Amendment $4,173,694
Amendment $4,173,694
Amendment $10,920
Amendment -$10,920
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Amendment -$10,920
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Amendment -$175,000
Amendment $50,000
Amendment -$175,000
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Amendment $15,000
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Amendment $7,500
Amendment $1,092
Amendment $9,828
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Subawards

Subrecipient Amount Awarded
Frameshift Labs, Inc. Frameshift will expand reanalysis methods to identify candidate genetic variants present in UDN participants based on updating knowledge sources, including… $99,734
Undiagnosed Diseases Network Foundation The UDNF is uniquely focused on providing support and improving access to diagnosis, research, and care for the millions of individuals living with rare and… $150,000
Baylor College Of Medicine The major activity of the Baylor Undiagnosed Diseases Network (UDN) Sequencing Core Laboratory during UDN Phase 3 will be to execute the ongoing genomic… $940,458
The Washington University The Washington University in St. Louis Zebrafish Core of the MOSC The Washington University in St. Louis (WashU) Zebrafish Core will be responsible for… $230,002
University Of Oregon The University of Oregon Zebrafish Core will be responsible for 1) identifying zebrafish orthologs of UDN genes that have been assigned to the Zebrafish Core,… $210,000
Baylor College Of Medicine We will continue to perform functional studies with the fly Model Organisms Screening Center (MOSC). We will perform these experiments for at least three… $700,000
Harvard Pilgrim Health Care, Inc. The Subcontract to the Harvard Pilgrim Health Care (HPHC) will support contributions for Dr. Hadley Stevens Smith, PhD, MPSA site-PI/Co-Investigator, and her… $21,000
Baylor College Of Medicine The major activity of the Baylor Undiagnosed Diseases Network (UDN) Sequencing Core Laboratory during UDN Phase 3 will be to execute the ongoing genomic… $1,090,400
Baylor College Of Medicine The major activity of the Baylor Undiagnosed Diseases Network (UDN) Sequencing Core Laboratory during UDN Phase 3 will be to execute the ongoing genomic… $3,051,162
The Washington University The Washington University in St. Louis (WashU) Zebrafish Core will be responsible for variant functional annotation for pathogenicity and causality in… $188,792
University Of Oregon The University of Oregon Zebrafish Core will be responsible for 1) identifying zebrafish orthologs of UDN genes that have been assigned to the Zebrafish Core,… $31,273
Harvard Pilgrim Health Care, Inc. The Subcontract to the Harvard Pilgrim Health Care (HPHC) will support contributions for Dr. Hadley Stevens Smith, PhD, MPSA site-PI/Co-Investigator, and her… $101,005
The Morehouse School Of Medicine, Inc. Community Engagement Meeting: The first component of this strategy involves strengthening collaboration and communication between UDN Clinical Sites,… $745,967
Commonspirit Health Research Institute • Continued targeted engagement with specialty physicians (namely, neurologists) from CommonSpirit that have expressed interest as a result of the… $36,132
Baylor College Of Medicine The Fly Core will collaborate with the clinicians who are evaluating undiagnosed cases for the DUCAS project. They will evaluate nominated variants after a… $836,342
University Of Oregon The University of Oregon Zebrafish Core will be responsible for 1) identifying zebrafish orthologs of UDN genes that have been assigned to the Zebrafish Core,… $63,000
Baylor College Of Medicine The MOSC will continue to receive submissions from Clinical Sites through the UDN Gateway, coordinated by the DMCC. The Gateway is the central database… $248,720
The Washington University Clinical Research Support Core of the Undiagnosed Diseases Network’s Data Management Coordinating Center (DMCC) at WUSTL, 2024-2025 The Clinical Research… $2,934,056
The Leland Stanford Junior University As part of the Clinical Research Support Core for the Undiagnosed Diseases Network, Stanford will provide bioinformatics and other expertise (ex. medical… $953,602
University Of Utah The University of Utah (and its sub-awardee Frameshift Labs) will collaboratively develop and improve the Calypso platform to support Undiagnosed Diseases… $869,351
The Morehouse School Of Medicine, Inc. Morehouse School of Medicine (MSM) will be acting as one of the regional hubs for Harvard's coordinating center, specifically focusing on the recruitment and… $1,102,934
University Of Alabama At Birmingham As the Data Management Core for the next phase of the Network, we aim to enable at least an order of magnitude increase in the scale of the operations of the… $1,140,302
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Quick answers

Who received award U2CNS132415?

U2CNS132415 was awarded to President And Fellows Of Harvard College by National Institute of Neurological Disorders and Stroke (National Institutes of Health) on April 19, 2023.

How much is award U2CNS132415 worth?

$59,366,899 has been obligated on U2CNS132415.

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