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Using Longitudinal Data to Characterize the Natural History of Fragile X Syndrome--Component A

Award Number: U01DD001189
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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¿ DESCRIPTION (provided by applicant): Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability and autism spectrum disorder, with an estimated frequency of about 1:4000-5000 in males and about 1:8000 in females. It affects all racial and ethnic groups worldwide. Despite the years of work, there are still considerable gaps in our knowledge about the natural history of FXS and the needs of individuals and families with FXS. Studies of co-occurring conditions have typically focused on each condition alone by using cross-sectional data, without examining the associations with other features of FXS or without taking a systems approach. Furthermore, in order to conduct well-designed clinical trials that capture the entire spectrum of the disorder, the natural history of those with FXS needs to be determined. This is particularly true for adults with FXS, about whom almost nothing is known regarding life trajectory and medical complications. The Fragile X Online Registry With Accessible Research Database (FORWARD) was implemented in 2012 to fill the recognized gap in knowledge. FORWARD consists of a patient and family registry and a longitudinal database populated by clinician- and parent-reported data from individuals living with FXS. Fragile X clinics that are members of the Fragile X Clinical and Research Consortium, in partnership with the National Fragile X Foundation and the Centers for Disease Control and Prevention, have contributed clinician- and parent- reported data to FORWARD. Currently, the database includes over 850 participants with FXS with a baseline data collection point. The longitudinal component now includes over 250 subjects with follow-up data. The goals of this proposal are to expand FORWARD by: 1) increasing the number of baseline and longitudinal data points, 2) building new data collection tools to enroll and characterize adults with FXS, and 3) expanding efforts to increase the number of participants who are currently under-represented in FXS studies Through analyses coordinated with Component B, the resulting longitudinal cohort characterized in FORWARD will allow the fragile X clinical research and public health community to examine changes over time in use of treatments and services, educational setting, medical problems, and other characteristics obtained from a combination of parent and clinician report. To our knowledge, FORWARD is now the largest collection of data about individuals with FXS attending specialty clinics, with the added value of the collection of clinician- reported information. The expansion proposed in this application, in combination with the detailed longitudinal cognitive, adaptive, language, motor, behavioral, social, and quality of life data to be collected at the combined Component C sites, is essential to further our understanding of the natural history of FXS and the needs of individuals and families with FXS across their life spans.


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: 2023 ( Subtotal = -$3,230 )
2023	2019	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	04	5	12/22/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	-$3,230
2023	2018	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	04	5	12/22/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2017	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	04	5	12/22/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2016	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	04	5	12/22/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2015	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	04	5	12/22/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = -$3,230

Issue Date FY: 2022 ( Subtotal = -$38,145 )
2022	2019	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/21/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	-$5,144
2022	2019	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	5/2/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	-$33,000
2022	2018	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	5/2/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2017	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	5/2/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2016	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	5/2/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2015	Research Foundation For Mental Hygiene Inc	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	5/2/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = -$38,145

Issue Date FY: 2020 ( Subtotal = $0 )
2020	2019	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	01	5	3/17/2020	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2019 ( Subtotal = $350,000 )
2019	2019	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	00	5	8/16/2019	NON-COMPETING CONTINUATION	$350,000
2019	2018	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	01	4	5/15/2019	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2019	2017	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	3	3/19/2019	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $350,000

Issue Date FY: 2018 ( Subtotal = $349,862 )
2018	2018	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	00	4	7/17/2018	NON-COMPETING CONTINUATION	$349,862
2018	2017	Research Foundation For Mental Hygiene, Inc.	1050 Forest Hill Rd	Staten Island	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	01	3	4/12/2018	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $349,862

Issue Date FY: 2017 ( Subtotal = $349,861 )
2017	2017	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC.	1050 FOREST HILL RD	STATEN ISLAND	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	003	3	8/1/2017	NON-COMPETING CONTINUATION	$349,861
2017	2016	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC.	1050 FOREST HILL RD	STATEN ISLAND	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	002	2	3/10/2017	NON-COMPETING CONTINUATION	$0
2017	2016	RESEARCH FOUNDATION FOR MENTAL HYGIENE INC	1050 FOREST HILL RD	STATEN ISLAND	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	2	12/21/2016	NON-COMPETING CONTINUATION	$0
2017	2016	RESEARCH FOUNDATION FOR MENTAL HYGIENE INC	1050 FOREST HILL RD	STATEN ISLAND	NY	10314	RICHMOND	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	2	10/26/2016	NON-COMPETING CONTINUATION	$0
														Subtotal = $349,861

Issue Date FY: 2016 ( Subtotal = $349,861 )
2016	2016	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC	150 BROADWAY SUITE 301	MENANDS	NY	12204	ALBANY	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	002	2	7/29/2016	NON-COMPETING CONTINUATION	$349,861
2016	2015	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC	1450 Western Avenue	ALBANY	NY	122033526	ALBANY	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	1	11/19/2015	NEW	$0
2016	2015	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC	1450 Western Avenue	ALBANY	NY	122033526	ALBANY	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	1	1/15/2016	NEW	$0
														Subtotal = $349,861

Issue Date FY: 2015 ( Subtotal = $349,861 )
2015	2015	RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC	150 BROADWAY SUITE 301	MENANDS	NY	12204	ALBANY	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	1	8/19/2015	NEW	$349,861
														Subtotal = $349,861

Grand Total All Awards = $1,708,071

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Using Longitudinal Data to Characterize the Natural History of Fragile X Syndrome--Component A

Award Number: U01DD001189

ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

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

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