Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)
This study aims to utilize data from routine surveillance of individuals with muscular dystrophy to improve the quality of care and lives of patients with this condition.
Specific aims
Supported by the Centers for Disease Control and Prevention (CDC), MD STARnet is a surveillance program that routinely collects health information of individuals with muscular dystrophy living in one of the six participating geographical sites throughout the United States. By capturing detailed information from health records, information collected from MD STARnet provides detailed and comprehensive data allowing researchers to identify approaches to enhance the quality of care of individuals affected by various forms of muscular dystrophy.
The research team at the University of Florida is led by Dr. Almut Winterstein. As a participating site within the MD STARnet network, the team actively conducts studies on healthcare and medication utilization and disease progression to better understand factors associated with care.
Study team
Principal investigator
Almut G Winterstein, RPh, PhD, FISPE, ASEMFL
Distinguished Professor in Pharmaceutical Outcomes & Policy, Director Center for Drug Evaluation & Safety, University of Florida
Co-investigator
Sonja A Rasmussen, MD, MS
Professor of Genetic Medicine, Johns Hopkins Medicine
Project Manager
Nicole Smolinski, PharmD, PhD
Research Assistant Professor, Pharmaceutical Outcomes & Policy, University of Florida
Research Assistant / Data Analyst
Celeste Ewig, PharmD
Graduate student, Pharmaceutical Outcomes & Policy, University of Florida
