What is Muscular Dystrophy:
Muscular dystrophies are a group of progressive muscle disorders that result in muscle degeneration (breakdown) and loss of strength. The disorders are due to genetic mutation and each type affects a specific group of muscles. Muscular dystrophy is seen in males and females of all races, with signs and symptoms appearing at different ages and varying in severity.
Various Forms of Muscular Dystrophy:
About MD STARnet
The Centers for Disease Control and Prevention (CDC) funds the Muscular Dystrophy Surveillance, Tracking, and Research Network, known as MD STARnet. MD STARnet collects critical information about muscular dystrophy that aims to improve care for those living with the disease.
The various forms of muscular dystrophy are individually rare, but these are devastating neuromuscular disorders that collectively have a major impact on the health and lives of affected individuals, family members, and communities.
Such diseases have attracted greater attention from the public, health care providers, and pharmaceutical/biotechnology firms in recent years, but despite the higher profile, knowledge about the epidemiology, access to healthcare resources, and outcomes of these disorders remains scarce, especially for members of minority populations.
Florida MD STARnet:
In 2019, northern Florida (regions 3 and 4) was selected to join the MD STARnet as the region encompasses the more densely populated counties, providing an excellent opportunity to study muscular dystrophy in a region where this has not in the past been extensively examined. Given the general high density and the sizeable minority populations that exist in these areas, it is expected that much new knowledge from these populations will be derived through the project. These results will provide accurate information, that may be used by health care providers in Florida and beyond, and health policy decision-makers.
The Florida MD STARnet aims to:
- Conduct standardized epidemiological analyses of the prevalence, access to health care resources, and behavioral health outcomes of the nine subtypes of muscular dystrophy to be investigated in northern Florida.
- Collect and analyze genetic diagnoses along with various clinical measures.
- To investigate pain, fatigue, and pregnancy in muscular dystrophy.
The project is facilitated mainly by the University of Florida which has a very broad substrate of colleges, state of the art clinical research facilities, multidisciplinary research centers and institutes, Rehabilitation Centers of Excellence, a Clinical and Translational Science Institute, one of the largest Rehabilitation Science Doctoral programs in the country, and outstanding investigators.