Surveillance of Muscular Dystrophies

utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source.