Wednesday, April 2, 2025
4/2/2025
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.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).