The Principal Investigator (PI) Meeting was a two-day virtual event focused on advancing data collection, research progress, and evaluation methodologies within the MD STARnet project. Facilitated via MS Teams, the meeting brought together investigators, researchers, and project coordinators to review surveillance progress, discuss ongoing research projects, and assess evaluation strategies. Discussions covered survey recruitment, interim research findings, database management, inter-rater reliability, and data completeness. The meeting also facilitated knowledge-sharing on study methodologies and best practices to enhance data accuracy and program impact.  The meeting reinforced MD STARnet’s commitment to rigorous data collection, high-quality research, and methodological consistency, paving the way for improved surveillance and public health impact in muscular dystrophy research.

Description:

• Progress in Data Collection & Research: Updates on survey recruitment efforts, research manuscript development, and the UVA abstraction process highlighted key milestones and future directions.

• Evaluation of Surveillance Data & Methods: Comprehensive review of DBMD priority topics, data completeness, and inter-rater reliability strengthened methodological consistency across sites.

• Collaborative Research Presentations: STROBE presentations on ELCD prevalence and CDC’s methods paper provided insights into epidemiological findings and study methodologies.

• Stakeholder Engagement & Lessons Learned: Discussions on evaluation surveys, data management practices, and research challenges fostered collaboration and continuous improvement.

• Strategic Planning for Future Data Pooling: Coordination of second data pooling efforts and updates on calculated variables ensured alignment on data standardization and reporting.