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Muscular Dystrophy Surveillance, Tracking and Research Network- (Components A and C)

Award Number: NU01DD000054
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: 09/01/2024
PERIOD OF PERFORMANCE END DATE: 08/31/2028

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Muscular Dystrophy Surveillance, Tracking and Research Network- (Components A and C) - As a current grantee institution of the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), RTI International presents our application for the National Center on Birth Defects and Developmental Disabilities Surveillance of Muscular Dystrophy Mandatory Component A (Core Surveillance) and Optional Component C (Novel Approaches to Longitudinal Data Collection). For Component A, we propose to (1) extend our current efforts into a new phase to conduct longitudinal, population-based surveillance on people with Duchenne (DMD), Becker (BMD), myotonic (DM), facioscapulohumeral (FSHD), limb-girdle (LGMD), congenital (CMD), Emery-Dreifuss (EDMD), and distal (DD) muscular dystrophies (MDs) living in the Piedmont area of North Carolina; (2) describe key health outcomes and health inequities in MD STARnet data; and (3) work cooperatively with other grantee institutions, the U.S. Centers for Disease Control and Prevention (CDC), and stakeholders to improve the health of individuals living with MDs. We will address the following strategies: Strategy 1: Surveillance Capacity. Building on our 10 years of experience as an MD STARnet grantee institution, we will maintain and enhance our data collection activities using clinic and administrative data to which we are granted access through a memorandum of agreement with the North Carolina Department of Health and Human Services (NC DHHS). We will continue our longstanding relationships with the four major neuromuscular clinics in our surveillance region, use administrative data and bordering states to achieve complete case ascertainment, and augment our data collection by expanding our relationships with other healthcare providers. We will respond to activities conducted by the Component B and C grantee institution(s) to improve the Network surveillance protocol. These activities will result in longitudinal surveillance data collected using MD STARnet methodology, which reflects the changing care and treatment landscape impacting a diverse set of adult- and pediatric-onset MDs. Strategy 2: Data Management and Reporting. Relevant site personnel will be trained and certified in medical record abstraction by the Component B grantee institution and participate in ongoing training and data quality improvement activities. We will use the standardized databases and applications provided by CDC for data collection, follow the Network protocol to monitor data quality, make improvements as needed, and provide CDC with individual-level data with limited identifiers from site data collection activities. Strategy 3: Dissemination. We will follow Network protocols to propose and carry out three data analysis projects using MD STARnet data to address gaps in the knowledge about MDs. We will present the findings of our projects at professional meetings attended by stakeholders and publish the findings as peer-reviewed journal articles. We will participate in projects and dissemination activities led by other grantee institutions and CDC and will continue our partnerships with the stakeholders in our site’s advisory committee to disseminate information about MDs in NC. Strategy 4: Component C. We will increase the efficiency of medical records abstraction by automating the extraction of FHIR-compliant data resources and other CDEs from an EHR. Using an artificial intelligence (AI)-assisted data harmonization tool, these data resources will be integrated with the appropriate, standardized MD STARnet surveillance database. Lastly, we will ease abstractor burden in transcribing data from paper and PDF files with a digital assistant, which automatically parses these data sources into discrete data elements.


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: 2027 ( Subtotal = $0 )
2027	2026	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	10/23/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2027	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	10/23/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2027	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	10/23/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2026 ( Subtotal = $500,000 )
2026	2026	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	9/10/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2026	2026	RESEARCH TRIANGLE INSTITUTE	3040 E. Cornwallis Rd	Durham	NC	27713	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	8/4/2026	NON-COMPETING CONTINUATION	$500,000
2026	2025	RESEARCH TRIANGLE INSTITUTE	3040 E. Cornwallis Rd	Durham	NC	27713	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	8/4/2026	NON-COMPETING CONTINUATION	$0
2026	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	9/10/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2026	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	9/10/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2026	2024	RESEARCH TRIANGLE INSTITUTE	3040 E. Cornwallis Rd	Durham	NC	27713	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	8/4/2026	NON-COMPETING CONTINUATION	$0
														Subtotal = $500,000

Issue Date FY: 2025 ( Subtotal = $549,996 )
2025	2025	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	7/30/2025	NON-COMPETING CONTINUATION	$549,996
2025	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	7/30/2025	NON-COMPETING CONTINUATION	$0
2025	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	1	10/17/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $549,996

Issue Date FY: 2024 ( Subtotal = $550,000 )
2024	2024	RESEARCH TRIANGLE INSTITUTE	3040 CORNWALLIS RD	DURHAM	NC	27709	DURHAM	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	1	8/5/2024	NEW	$550,000
														Subtotal = $550,000

Grand Total All Awards = $1,599,996

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Muscular Dystrophy Surveillance, Tracking and Research Network- (Components A and C)

Award Number: NU01DD000054

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: 09/01/2024

PERIOD OF PERFORMANCE END DATE: 08/31/2028

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