RTI International, UNC to survey muscular dystrophy in North Carolina’s Piedmont

RESEARCH TRIANGLE PARK, N.C. — RTI International, in partnership with the University of North Carolina at Chapel Hill, has been awarded a cooperative agreement with the Centers for Disease Control and Prevention to conduct muscular dystrophy surveillance in the Piedmont region of North Carolina. Information collected from the population-based surveillance and follow-up will support research to aid improvements in diagnosis, care and policy.

Researchers from RTI and UNC-CH will use the information to describe the prevalence and history of muscular dystrophy and other neuromuscular disorders in North Carolina, as well as the health care service use and costs of NC residents with these conditions. The data will be analyzed and used to disseminate information that supports a reduction in the age of diagnosis and provides critical data to help affected individuals and their families.

"The goal of this project is to collect information about muscular dystrophy that will ultimately help improve the care of people living with and affected by this condition," said Nedra Whitehead, Ph.D., director of RTI's Center for Genomics in Public Health and Medicine and the project's principal investigator. 

Muscular dystrophies are a group of diseases caused by defects in a person's genes and characterized by progressive muscle weakness and degeneration.  The types of Muscular dystrophy vary by muscle groups affected, severity, genes involved, and progression of the condition. 

As part of the CDC's Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet), the new project will establish a MD STARnet surveillance system in the Piedmont. MD STARnet is a data collection and research program that analyzes information provided by individuals with muscular dystrophy. It is the only program in the United States that studies everyone with muscular dystrophy in a specific geographic area, not just those who go to muscular dystrophy medical clinics.

Researchers will examine disparities in the access to care by proximity to source of care, race and ethnicity. The project will also observe the impact of specific clinical treatments on outcomes for certain types of muscular dystrophy and neuromuscular disorders.

"Examining racial disparities will be a high priority for our team, as this project will be one of the first MD STARnet sites with a substantial representation of African Americans," Whitehead said. "North Carolina is culturally and racially diverse, and its inclusion in the MD STARnet will add information on the prevalence and course of muscular dystrophy and other neuromuscular disorders among African Americans." 

The partnership between RTI and UNC-Chapel Hill was made possible by the North Carolina Translational and Clinical Sciences (NC TraCS) Institute, the integrated home of the Clinical and Translational Science Awards (CTSA) Program at UNC-CH, supported through the National Institute of Health's (NIH) National Center for Advancing Translational Sciences (NCATS). In 2013, RTI joined NC TraCS as a research partner in an effort to advance translation research by combining research strengths, resources, and encouraging cross-institutional collaboration. 

As part of NC TraCS, RTI was able to partner with relevant neurology collaborators with clinical expertise in muscular dystrophies at UNC-CH.   RTI and UNC-CH received support from the North Carolina Division of Public Health, and local and national muscular dystrophy organizations.

"Our team is looking forward to working with these organizations as we establish our surveillance program," Whitehead said.