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Pacific Northwest Undiagnosed Disease Network Clinical Site

Award Number: U01NS134355
ORGANIZATION: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/15/2023
PERIOD OF PERFORMANCE END DATE: 07/31/2028

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View Award Description

Pacific Northwest Undiagnosed Disease Network Clinical Site - Abstract The Undiagnosed Diseases Network (UDN) addresses a critical healthcare challenge: there are approximately 25-30 million Americans living with a rare disease, many of whom endure prolonged diagnostic odysseys without resolution. While ~7,000 recognized rare diseases collectively affect 5-10% of the population, patients with undiagnosed conditions face unique burdens including repeated testing, escalating costs, and ongoing uncertainty about their prognosis and treatment options. The UDN has two primary goals: first, to provide a diagnosis to patients who have undergone a protracted, unsuccessful diagnostic odyssey, and second, to seize the opportunities for scientific discovery that these unique patients offer while sharing our advancements with others. The UDN has described previously unidentified disorders and identified many novel disease- associated genes. These diagnoses often come after years of unsuccessful, costly, and often redundant workups and outside testing. The Pacific Northwest (PNW) diagnostic center of excellence (DCoE; formerly called a clinical site) reviews, accepts, and evaluates UDN participants while developing strategies to end their diagnostic odysseys. We have demonstrated how new technologies can be applied to challenging clinical patients and scientific problems. This requested supplement is an application for funds for activities not originally planned. These Aims include novel strategies to solve previously unsolved cases.


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: 2026 ( Subtotal = $831,557 )
2026	2026	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	8	8/18/2026	NON-COMPETING CONTINUATION	$694,557
2026	2026	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	003	8	9/17/2026	SUPPLEMENT FOR EXPANSION	$137,000
2026	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	2/10/2026	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
2026	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	2/25/2026	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
														Subtotal = $831,557

Issue Date FY: 2025 ( Subtotal = $694,557 )
2025	2025	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	7	8/26/2025	NON-COMPETING CONTINUATION	$0
2025	2025	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	7	8/6/2025	NON-COMPETING CONTINUATION	$694,557
2025	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	5/7/2025	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
2025	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	003	5	9/10/2025	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
														Subtotal = $694,557

Issue Date FY: 2024 ( Subtotal = $1,844,684 )
2024	2024	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	003	6	7/29/2024	COMPETING CONTINUATION	$703,807
2024	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	5	7/22/2024	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
2024	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	1/11/2024	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$1,140,877
2024	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	4/8/2024	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
														Subtotal = $1,844,684

Issue Date FY: 2023 ( Subtotal = $753,415 )
2023	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	001	5	5/2/2023	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
2023	2023	UNIVERSITY OF WASHINGTON	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	000	5	4/27/2023	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$470,641
2023	2023	THE UNIVERSITY OF WASHINGTON VICE PR	4333 BROOKLYN AVE NE	SEATTLE	WA	98195	KING	USA	Extramural Research Programs in the Neurosciences and Neurological Disorders	002	5	9/14/2023	SUPPLEMENT FOR EXPANSION	$282,774
														Subtotal = $753,415

Grand Total All Awards = $4,124,213

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Pacific Northwest Undiagnosed Disease Network Clinical Site

Award Number: U01NS134355

ORGANIZATION: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

PERIOD OF PERFORMANCE START DATE: 09/15/2023

PERIOD OF PERFORMANCE END DATE: 07/31/2028

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