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Primary Immune Deficiency Treatment Consortium

Award Number: U54AI082973
ORGANIZATION: NATIONAL INSTITUTE OF ALLERGY & INFECTIOUS DISEASES
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/12/2009
PERIOD OF PERFORMANCE END DATE: 08/31/2025

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Primary Immune Deficiency Treatment Consortium - ABSTRACT/SUMMARY The Primary Immune Deficiency Treatment Consortium (PIDTC), an RDCRN consortium of 44 immunology and hematopoietic stem cell transplant centers throughout the USA and Canada, was established in 2009 to study rare genetic disorders of the immune system, collectively known as primary immunodeficiency diseases (PIDs). The goals of the PIDTC are to understand PIDs and define optimal approaches for their definitive treatment. In its first 9 years, the PIDTC has studied outcomes following hematopoietic cell transplantation (HCT), gene therapy (GT) and enzyme replacement therapy (ERT) for patients with severe combined immunodeficiency (SCID), Wiskott-Aldrich syndrome (WAS) and chronic granulomatous disease (CGD). These PIDs were chosen because they have been among the most life-threatening and difficult to treat, often requiring HCT for survival. Because no single center follows enough affected individuals to encompass the full spectrum of these disorders, a consortium is essential to define the natural history of each PID. Moreover, historically, individual centers developed their own approaches to treatment, without consensus regarding indications or timing for HCT, types of conditioning regimens, or sources of donor cells. Thus, multicenter studies are required for robust statistical assessment to compare impacts not only of patient-related variables, but also of treatment-related variables on clinical outcome. The PIDTC is organized to develop, perform and learn from multicenter studies. Our major contributions to understanding of PID pathogenesis and defining which treatments produce optimal clinical outcomes have been published in 111 papers. Close relationships with multiple Patient Advocacy Groups (PAGs) have led to publications on high-priority issues for affected individuals and their families, including quality of life and long-term outcomes. PIDTC Pilot Projects have advanced newborn screening for SCID and introduced important mechanistic studies, while our Career Enhancement Core has held an annual PIDTC Scientific Workshop and Education Day and has supported 20 PID trainees, all of whom remain active in academic research. PIDTC studies of SCID have enabled our design and implementation of the first prospective multicenter trial to determine the minimal dose of busulfan conditioning to achieve T and B cell immune reconstitution. Looking forward, the PIDTC will undertake a new initiative to study Primary Immune Regulatory Disorders (PIRD) as it continues its studies of SCID and CGD. The major impact of the proposed research will be establishment of baseline data and organizational structures to undertake multicenter clinical trials that will apply improved basic understanding to achieve further evidence-based advances in the care of PIDs.


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: 2024 ( Subtotal = $0 )
2024	2023	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94103	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	15	5/31/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $1,846,257 )
2023	2023	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	15	8/31/2023	NON-COMPETING CONTINUATION	$1,846,257
2023	2022	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	14	5/23/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,846,257

Issue Date FY: 2022 ( Subtotal = $1,846,257 )
2022	2022	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	14	8/11/2022	NON-COMPETING CONTINUATION	$1,846,257
2022	2021	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	13	11/3/2021	NON-COMPETING CONTINUATION	$0
2022	2021	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	13	6/23/2022	NON-COMPETING CONTINUATION	$0
2022	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	003	10	8/26/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,846,257

Issue Date FY: 2021 ( Subtotal = $1,846,474 )
2021	2021	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	13	8/12/2021	NON-COMPETING CONTINUATION	$1,846,474
2021	2020	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	12	10/28/2020	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,846,474

Issue Date FY: 2020 ( Subtotal = $1,869,799 )
2020	2020	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	003	12	8/31/2020	NON-COMPETING CONTINUATION	$1,869,799
2020	2019	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	11	4/4/2020	COMPETING CONTINUATION	$193,613
2020	2019	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	11	6/19/2020	COMPETING CONTINUATION	$0
2020	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	10	4/4/2020	NON-COMPETING CONTINUATION	-$193,613
														Subtotal = $1,869,799

Issue Date FY: 2019 ( Subtotal = $1,604,571 )
2019	2019	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	11	9/14/2019	COMPETING CONTINUATION	$1,604,571
2019	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	10	5/15/2019	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,604,571

Issue Date FY: 2018 ( Subtotal = $1,533,468 )
2018	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	003	10	9/5/2018	NON-COMPETING CONTINUATION	$329,999
2018	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	004	10	9/7/2018	NON-COMPETING CONTINUATION	$0
2018	2018	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 425	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	10	8/15/2018	NON-COMPETING CONTINUATION	$1,203,469
2018	2017	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 420	SAN FRANCISCO	CA	94103	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	9	8/6/2018	NON-COMPETING CONTINUATION	$0
2018	2017	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 420	SAN FRANCISCO	CA	94103	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	9	7/16/2018	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,533,468

Issue Date FY: 2017 ( Subtotal = $1,543,394 )
2017	2017	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 420	SAN FRANCISCO	CA	94103	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	9	8/22/2017	NON-COMPETING CONTINUATION	$330,000
2017	2017	REGENTS OF THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, THE	1855 FOLSOM ST STE 420	SAN FRANCISCO	CA	94103	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	9	8/15/2017	NON-COMPETING CONTINUATION	$1,213,394
														Subtotal = $1,543,394

Issue Date FY: 2016 ( Subtotal = $1,528,517 )
2016	2016	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	8	8/19/2016	NON-COMPETING CONTINUATION	$1,528,517
														Subtotal = $1,528,517

Issue Date FY: 2015 ( Subtotal = $1,543,499 )
2015	2015	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	7	8/10/2015	NON-COMPETING CONTINUATION	$1,236,277
2015	2015	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	7	8/24/2015	NON-COMPETING CONTINUATION	$307,222
														Subtotal = $1,543,499

Issue Date FY: 2014 ( Subtotal = $1,249,464 )
2014	2014	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	6	8/21/2014	COMPETING CONTINUATION	$0
2014	2014	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	6	8/14/2014	COMPETING CONTINUATION	$1,249,464
2014	2014	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	6	8/18/2014	COMPETING CONTINUATION	$0
														Subtotal = $1,249,464

Issue Date FY: 2013 ( Subtotal = $1,455,444 )
2013	2013	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	5	8/6/2013	NON-COMPETING CONTINUATION	$1,120,881
2013	2013	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	003	5	8/29/2013	NON-COMPETING CONTINUATION	$0
2013	2013	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	5	8/28/2013	NON-COMPETING CONTINUATION	$30,517
2013	2013	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	5	8/14/2013	NON-COMPETING CONTINUATION	$304,046
														Subtotal = $1,455,444

Issue Date FY: 2012 ( Subtotal = $1,530,119 )
2012	2012	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	001	4	8/10/2012	NON-COMPETING CONTINUATION	$332,183
2012	2012	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	000	4	8/3/2012	NON-COMPETING CONTINUATION	$1,197,936
2012	2012	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	4	8/15/2012	NON-COMPETING CONTINUATION	$0
														Subtotal = $1,530,119

Issue Date FY: 2011 ( Subtotal = $1,428,183 ) (Continued on the next page)
2011	2011	UNIVERSITY OF CALIFORNIA-SAN FRANCISCO	BOX 0812	SAN FRANCISCO	CA	94143	SAN FRANCISCO	USA	Allergy and Infectious Diseases Research	002	3	9/22/2011	EXTENSION WITH OR WITHOUT FUNDS	$187,847
Grand Total All Awards = $23,296,564

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Primary Immune Deficiency Treatment Consortium

Award Number: U54AI082973

ORGANIZATION: NATIONAL INSTITUTE OF ALLERGY & INFECTIOUS DISEASES

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

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

PERIOD OF PERFORMANCE START DATE: 09/12/2009

PERIOD OF PERFORMANCE END DATE: 08/31/2025

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