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Sickle Cell Disease Data Collection Program in Wisconsin

Award Number: NU58DD000013
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: HEALTH SERVICES
PERIOD OF PERFORMANCE START DATE: 09/30/2020
PERIOD OF PERFORMANCE END DATE: 09/29/2023

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Sickle Cell Disease Data Collection Program in Wisconsin - PROJECT ABSTRACT SUMMARY Sickle cell disease (SCD) is a rare genetic condition that affects approximately 100,000 individuals in the United States of America. The Newborn Screening Program exists in every state of the country to help identify babies born with SCD. However, there is no national surveillance system for SCD. This results in a lack of knowledge about the epidemiology and natural history of the disease. In addition to Newborn Screening data, there are various other existing data sources including Vital Records, State Medicaid data and electronic health records (EHR) data that can help identify individuals with SCD. These data collectively are a rich source to inform healthcare practices and health outcomes of those with SCD, however they are currently not linked. In this project we propose to establish a sickle cell data collection program, leveraging and linking the various data sources for the state of Wisconsin. Specifically, we will develop a Wisconsin SCD (WI-SCD) Registry, with individual level data linked from the State’s Newborn Screening Laboratory, Vital Records, Medicaid, and EHR. The program will result in standardized data collection methods for all individuals with SCD in Wisconsin, which will be disseminated regularly in an aggregate manner. The proposed program will establish data collaborations from partners across the state of Wisconsin and engagement with stakeholders including researchers, clinicians, policy makers and individuals with SCD, to inform policies and improve health outcomes for individuals with SCD in Wisconsin. This will result in a comprehensive understanding of the epidemiology, clinical practices, laboratory result profiles and health outcomes for the SCD population in Wisconsin. Our proposed application has the unique strength of being able to link EHR data and data from state partners for the majority of individuals living with SCD in Wisconsin. The principal investigator (Singh) has extensive experience analyzing big data including EHR and Medicaid data for the SCD population, making her well-qualified to lead the proposed project. The co-Investigator (Panepinto) is a pediatric hematologist and a well-established researcher with multiple years of experience in health services research and SCD. All program personnel have worked together on numerous federally funded projects and have a track record of working efficiently as a team. The program team’s distinct experience, along with engagement with SCD stakeholders, will ensure the success of the proposed WI-SCD Registry.


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 = -$11 )
2024	2022	The Medical College of Wisconsin, Inc.	8701 Watertown Plank Rd	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	02	3	1/25/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	-$11
2024	2021	The Medical College of Wisconsin, Inc.	8701 Watertown Plank Rd	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	02	3	1/25/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2020	The Medical College of Wisconsin, Inc.	8701 Watertown Plank Rd	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	02	3	1/25/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = -$11

Issue Date FY: 2023 ( Subtotal = $0 )
2023	2022	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Road	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	3	12/12/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Road	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	3	12/12/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Road	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	3	12/12/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $250,000 )
2022	2022	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	8/25/2022	NON-COMPETING CONTINUATION	$250,000
2022	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	8/25/2022	NON-COMPETING CONTINUATION	$0
2022	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	03	2	11/19/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2022	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	3	8/25/2022	NON-COMPETING CONTINUATION	$0
2022	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	03	2	11/19/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $250,000

Issue Date FY: 2021 ( Subtotal = $249,793 )
2021	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Rd	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	8/20/2021	NON-COMPETING CONTINUATION	$185,429
2021	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	2	9/21/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$64,364
2021	2021	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	02	2	9/28/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2021	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	2	9/21/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2021	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Rd	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	01	1	11/19/2020	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2021	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 WATERTOWN PLANK RD	MILWAUKEE	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	02	2	9/28/2021	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2021	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Rd	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	2	8/20/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $249,793

Issue Date FY: 2020 ( Subtotal = $113,533 )
2020	2020	MEDICAL COLLEGE OF WISCONSIN, INC., THE	8701 Watertown Plank Rd	Milwaukee	WI	53226	MILWAUKEE	USA	Blood Disorder Program: Prevention, Surveillance, and Research	00	1	9/5/2020	NEW	$113,533
														Subtotal = $113,533

Grand Total All Awards = $613,315

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Sickle Cell Disease Data Collection Program in Wisconsin

Award Number: NU58DD000013

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

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: HEALTH SERVICES

PERIOD OF PERFORMANCE START DATE: 09/30/2020

PERIOD OF PERFORMANCE END DATE: 09/29/2023

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