The Centers for Disease Control and Prevention has awarded a $2.5 million grant to the South Carolina Department of Health and Environmental Control (DHEC) and the University of South Carolina (USC) to study the prevalence of muscular dystrophy in South Carolina.
A group of genetic disorders that result in muscle weakness over time, muscular dystrophy decreases mobility and makes the tasks of daily living difficult. A rare disease, there is not a lot of data on how many people are impacted by this condition.
The $500,000 per year grant will go toward the study of the prevalence and burden of muscular dystrophy, and other neuro-muscular disorders, here in South Carolina over the next five years.
DHEC will work jointly with the USC Norman J. Arnold School of Public Health and School of Medicine to study this disorder.
“This funding gives South Carolina a wonderful opportunity to investigate not only how many South Carolinians are affected by muscular dystrophy, which we do not currently know, but more importantly how access to medical care and the quality of the medical care received by these individuals and families might be improved state-wide,” said Michael Smith, the DHEC Maternal and Child Health epidemiologist and director of the Division of Research and Planning.
“This grant builds on a previously funded CDC project that was a collaboration between USC and DHEC,” said Suzanne McDermott, professor in the Department of Epidemiology and Biostatistics in the USC Norman J. Arnold School of Public Health. “Together, the health experts from the two organizations have the capacity to describe this rare, but important and costly condition, in South Carolina. We are excited about joining a group of colleagues from around the country, to learn about muscular dystrophy.”
Smith, along with McDermott, will be the co-principal investigators for the new muscular dystrophy project, called the Muscular Dystrophy Surveillance, Tracking, and Research Network, or MD StarNet. The project will have an emphasis on health care utilization and costs for individuals and families affected by muscular dystrophy and will study the associations between specific treatments and outcomes.
DHEC will hire one full-time project coordinator and two full-time nurses to assist in data collection, the USC School of Public Health will also hire a research coordinator.
The grant began September 1, 2014.
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