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Comp B-Improving Care of Wisconsin Residents Living with Spina Bifida: The NSBPR

Award Number: U01DD001063
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): Spina Bifida (SB), a group of congenital conditions caused by malformations in the neural tube development early in pregnancy, is one of the most common disabling conditions in our country today. These conditions result in a wide range of spinal cord and central nervous system impairments that affect many body systems. Further complicating the care of persons with SB is the absence of knowledge regarding the prevalence or severity of the potential health issues across clinical programs and the significant variance in health outcomes. The National Spina Bifida Patient Registry (NSBPR) was developed to address this gap. The overall goal of this project is improving the care of individuals living with SB. Our continued active participation in the NSBPR will address this goal. The project has two aims. The first aim is to extend participation in the core components of the NSBPR. Specifically, over the next five years we will collect and submit NSBPR data from 200 enrolled and actively maintained participants with SB in the SB Programs at Children's Hospital of Wisconsin and its collaborating adult clinics at the Froedtert Memorial Lutheran Hospital/Medical College of Wisconsin. Further, we will participate in data quality assessments, provide basic data on eligible patients who are not enrolled in the NSBPR, implement the evaluation and dissemination plans and participate in the NSBPR Coordinating Committee. The second aim addresses expansion of the research activities. Specifically, we will generate two research questions/hypotheses for NSBPR data, develop the research plan with collaborators both within Wisconsin programs and across the NSBPR sites, and disseminate findings and translate the findings of NSBPR analyses to practice. Finally, we will develop and pilot test select additional components that may be useful for expansion of the NSBPR. The two research studies included in this proposal are, "Factors Predicting Pressure Ulcers in Children and Adults with Spina Bifida" and "Measuring Body Composition in Children with Spina Bifida." Our site will continue to use the data collection instrument developed by the NSBPR (V2) for data collection and entry. Data is entered through a web-based system and primarily de-identified data are provided to Centers for Disease Control and Prevention (CDC). Analyses of the NSBPR data will be guided by the Coordinating Committee of NSBPR sites and involve clinicians from the participating sites working with statisticians and scientists from CDC. A detailed dissemination plan for consumers and professionals is included in this proposal. The expanded participation of the Wisconsin site in the NSBPR proposed in this application is expected to have a positive impact on the care of persons with SB. Further, it will provide a foundation for research that expands our understanding of the condition and its treatment. The outcome of this project is a database that can be used to describe variations in practice across settings, facilitate data analyses that s the basis for best practices in clinical care, and improves quality across programs.


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: 2022 ( Subtotal = -$6,683 )
2022	2018	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	-$6,683
2022	2017	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2016	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2015	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2014	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	03	5	9/20/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = -$6,683

Issue Date FY: 2019 ( Subtotal = $0 )
2019	2018	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W Wisconsin Ave	Milwaukee	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	02	5	11/5/2018	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2019	2018	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W Wisconsin Ave	Milwaukee	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	01	5	10/4/2018	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2018 ( Subtotal = $67,060 )
2018	2018	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	Milwaukee	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	00	5	6/27/2018	NON-COMPETING CONTINUATION	$67,060
														Subtotal = $67,060

Issue Date FY: 2017 ( Subtotal = $67,060 )
2017	2017	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	4	7/27/2017	NON-COMPETING CONTINUATION	$67,060
2017	2016	CHILDRENS HOSPITAL OF WISCONSIN INC	9000 W WISCONSIN AVE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	3	5/1/2017	NON-COMPETING CONTINUATION	$0
														Subtotal = $67,060

Issue Date FY: 2016 ( Subtotal = $67,060 )
2016	2016	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	002	3	7/5/2016	NON-COMPETING CONTINUATION	$67,060
2016	2015	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	2	3/1/2016	NON-COMPETING CONTINUATION	$0
2016	2015	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	2	5/5/2016	NON-COMPETING CONTINUATION	$0
														Subtotal = $67,060

Issue Date FY: 2015 ( Subtotal = $67,060 )
2015	2015	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	002	2	7/28/2015	NON-COMPETING CONTINUATION	$67,060
2015	2014	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	1	11/4/2014	NEW	$0
2015	2014	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	1	1/8/2015	NEW	$0
														Subtotal = $67,060

Issue Date FY: 2014 ( Subtotal = $60,060 )
2014	2014	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	002	1	1/8/2015	NEW	$0
2014	2014	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53226	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	000	1	8/21/2014	NEW	$60,060
2014	2014	CHILDRENS HOSPITAL OF WISCONSIN, INC	9000 W WISCONSIN AVENUE	MILWAUKEE	WI	53201	MILWAUKEE	USA	Rare Disorders: Research, Surveillance, Health Promotion, and Education	001	1	11/4/2014	NEW	$0
														Subtotal = $60,060

Grand Total All Awards = $321,617

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Comp B-Improving Care of Wisconsin Residents Living with Spina Bifida: The NSBPR

Award Number: U01DD001063

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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