Project Name: Multi-Site Muscular Dystrophy Surveillance Protocol
The Surveillance Protocol is a longitudinal, population-based surveillance initiative designed to monitor and analyze key health outcomes and disparities in individuals with muscular dystrophies (MD). Conducted across six geographical sites in the U.S. (Florida, Iowa, North Carolina, New York, South Carolina, and Utah), the project aims to assess the prevalence, mortality, healthcare utilization, disease progression, and factors influencing patient outcomes. Using a multiple-source methodology for case identification, including healthcare facilities, administrative datasets, and national registries, the project will track individuals diagnosed with various types of MD and collect clinical data from 2015 onward. Additionally, the project integrates data modernization efforts, such as electronic medical record (EMR) extraction and specialized training for data abstractors, to enhance accuracy and efficiency in data collection. By providing high-quality, population-based data, the protocol will contribute to advancing research, improving healthcare practices, and ultimately enhancing the quality of life for individuals with muscular dystrophies.
Description:
Comprehensive Longitudinal Data Collection: Expanded surveillance efforts to track health outcomes, disease progression, and healthcare access for individuals with MD across multiple states.
Enhanced Data Accuracy & Modernization: Implemented new software and data extraction techniques to improve efficiency in case identification and clinical data abstraction.
Improved Understanding of Health Disparities: Collected data on social determinants of health, access to care, and the impact of new treatments to identify gaps in healthcare equity.
Standardized Case Ascertainment & Review Process: Developed rigorous quality control measures, inter-rater reliability assessments, and clinical review protocols to ensure data consistency across sites.
Stronger Collaboration & Training Initiatives: Established a structured training program for data abstractors, ensuring standardized data collection methodologies and quality assurance across all participating sites.
Impact on Public Health Policy & Treatment Approaches: Findings will guide policymakers, healthcare providers, and researchers in improving interventions, access to care, and treatment options for individuals living with MD.