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NY ScreenPlus: A Comprehensive, Flexible, Multi-disorder Newborn Screening Program

Award Number: R01HD073292
ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/04/2012
PERIOD OF PERFORMANCE END DATE: 08/31/2029

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NY ScreenPlus: A Comprehensive, Flexible, Multi-disorder Newborn Screening Program - PROJECT SUMMARY Newborn Screening (NBS) is celebrating its 60th anniversary as one of the most important and life-saving public health programs in the United States. NBS has enabled countless babies with rare disorders to lead productive lives because of early detection and early treatment. Importantly, current NBS panels reflect only a fraction of the potentially screenable disorders, i.e. disorders that are serious, treatable, and detectable in dried blood spots (DBS). There are many other disorders where affected children would benefit from early detection. Thus, there is an ever pressing need to expand our current NBS practices. Pilot NBS programs are necessary to gather objective data about the feasibility, accuracy, and outcome of screening for new disorders. ScreenPlus is a multi-disorder, multi-tiered, flexible pilot NBS program that screens consented infants from diverse backgrounds for a panel of 14 rare disorders in addition to those on New York’s routine panel. ScreenPlus includes long term follow up of identified infants to enable analysis of critical outcome data, with the goal of describing pre-symptomatic disease progression, identifying optimal times to initiate therapy, and determining whether there is a benefit to early detection. Parental engagement is at the core of ScreenPlus and includes parental education and informed consent, as well as a series of surveys, qualitative interviews and focus groups to elicit parental perspectives on the complexities of NBS expansion. The creation of a complex cost share infrastructure with funding from NIH, industry sponsors, and patient advocacy groups has enabled the program to effectively and efficiently function with transparency and mutual benefit. Our current funding cycle showed exceptional progress in all aspects of the study. We validated screening assays, contracted with sponsors, and initiated live screening. We identified affected infants who are now being monitored and treated as needed. We created and executed parental surveys, which are providing fascinating and important insights into the future of NBS expansion. In this Competitive Renewal application, we hope to build upon the remarkable progress that we have made thus far to provide critical, detailed data to help guide objective, ethically sensitive decision-making about NBS expansion.


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	2024	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	001	11	5/9/2025	COMPETING CONTINUATION	$205,568
2025	2023	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	10	5/9/2025	NON-COMPETING CONTINUATION	-$205,568
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $758,319 )
2024	2024	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	001	11	9/11/2024	COMPETING CONTINUATION	$758,319
2024	2023	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	10	9/4/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $758,319

Issue Date FY: 2023 ( Subtotal = $617,558 )
2023	2023	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	10	7/10/2023	NON-COMPETING CONTINUATION	$617,558
														Subtotal = $617,558

Issue Date FY: 2022 ( Subtotal = $620,440 )
2022	2022	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	9	8/8/2022	NON-COMPETING CONTINUATION	$620,440
														Subtotal = $620,440

Issue Date FY: 2021 ( Subtotal = $624,447 )
2021	2021	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	8	7/21/2021	NON-COMPETING CONTINUATION	$624,447
														Subtotal = $624,447

Issue Date FY: 2020 ( Subtotal = $642,968 )
2020	2020	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	002	7	8/24/2020	NON-COMPETING CONTINUATION	$642,968
2020	2019	ALBERT EINSTEIN COLLEGE OF MEDICINE, INC.	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	6	12/17/2019	COMPETING CONTINUATION	-$686,197
2020	2019	ALBERT EINSTEIN COLLEGE OF MEDICINE	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	001	6	12/20/2019	COMPETING CONTINUATION	$686,197
														Subtotal = $642,968

Issue Date FY: 2019 ( Subtotal = $686,197 )
2019	2019	ALBERT EINSTEIN COLLEGE OF MEDICINE, INC.	1300 MORRIS PARK AVE	BRONX	NY	10461	BRONX	USA	Child Health and Human Development Extramural Research	000	6	9/13/2019	COMPETING CONTINUATION	$686,197
														Subtotal = $686,197

Issue Date FY: 2018 ( Subtotal = -$1 )
2018	2016	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	ONE GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Child Health and Human Development Extramural Research	001	5	8/29/2018	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	-$1
2018	2016	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	ONE GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Child Health and Human Development Extramural Research	000	5	11/8/2017	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
														Subtotal = -$1

Issue Date FY: 2016 ( Subtotal = $555,260 )
2016	2016	ALBERT EINSTEIN COLLEGE OF MEDICINE INC	111 E 210TH ST	BRONX	NY	10467	BRONX	USA	Child Health and Human Development Extramural Research	000	5	6/13/2016	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$555,260
														Subtotal = $555,260

Issue Date FY: 2015 ( Subtotal = $570,420 )
2015	2015	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL, BOX 3500	NEW YORK-NEW YORK	NY	10029		USA	Child Health and Human Development Extramural Research	000	4	6/15/2015	NON-COMPETING CONTINUATION	$570,420
														Subtotal = $570,420

Issue Date FY: 2014 ( Subtotal = $572,384 )
2014	2014	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL, BOX 3500	NEW YORK-NEW YORK	NY	10029		USA	Child Health and Human Development Extramural Research	000	3	5/14/2014	NON-COMPETING CONTINUATION	$572,384
														Subtotal = $572,384

Issue Date FY: 2013 ( Subtotal = $562,366 )
2013	2013	MT SINAI SCHOOL OF MEDICINE	1 GUSTAVE L LEVY PL, BOX 3500	NEW YORK-NEW YORK	NY	10029		USA	Child Health and Human Development Extramural Research	000	2	6/7/2013	NON-COMPETING CONTINUATION	$562,366
														Subtotal = $562,366

Issue Date FY: 2012 ( Subtotal = $631,517 )
2012	2012	MT SINAI SCHOOL OF MEDICINE	1 GUSTAVE L LEVY PL, BOX 3500	NEW YORK-NEW YORK	NY	10029		USA	Child Health and Human Development Extramural Research	000	1	8/28/2012	NEW	$631,517
														Subtotal = $631,517

Grand Total All Awards = $6,841,875

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NY ScreenPlus: A Comprehensive, Flexible, Multi-disorder Newborn Screening Program

Award Number: R01HD073292

ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

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

PERIOD OF PERFORMANCE START DATE: 09/04/2012

PERIOD OF PERFORMANCE END DATE: 08/31/2029

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