Frequently Asked Questions (FAQs)

What is Muscular Dystrophy (MD)? +

The muscular dystrophies (MD) are a group of differing genetic conditions that affect how an individual's muscles work. Muscular dystrophies cause a person's muscles to get weaker and break down over time. There are nine major types of muscular dystrophy-Duchenne, Becker, Myotonic, Congenital, Limb Girdle, Emery-Dreifuss, Facioscapulohumeral, Distal, and Oculopharyngeal-and they vary in the age when symptoms first begin to appear, which muscle groups they affect, which genes are involved, how severely the condition affects the person, and the speed at which the condition advances. The muscular dystrophies are only one set of conditions of the nerves and muscles, and represent a large variety of rare diseases that affect the peripheral nervous system.

What is MD STARnet? +

The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) is a research network involving several states, which are collecting critical information about muscular dystrophies (MD). In September 2014, North Carolina was added to the MD STARnet project as one of three new states for which information on individuals living with MDs will be collected. RTI International and the University of North Carolina at Chapel Hill (UNC Chapel Hill), with the support and cooperation of the North Carolina Department of Health and Human Services Division of Public Health, are establishing an MD STARnet project in the Piedmont region of North Carolina.

Why is this important? +

MD STARnet is the only population-based muscular dystrophy tracking program in the United States. Information collected by this program will help improve the care for people living with MDs and their families. See the FAQ section titled: "Who will be helped by MD STARnet Piedmont, North Carolina?" for details regarding how this improvement can occur.

Why the Piedmont Region of North Carolina? +

This project will provide the first surveillance for MDs in North Carolina in more than 60 years. The Piedmont region is the largest urban area in North Carolina. It is home to more than half of the state's residents. In addition, examining racial disparities is a high priority for MD STARnet and nearly 25% of the region's population is African American. This rich diversity makes it one of the first sites that can provide important information that helps improve understanding of how common MD is and the course of the conditions among African Americans.

Who will be helped by MD STARnet Piedmont, North Carolina? +

Individuals affected by MDs and their families; caregivers; researchers studying MD; health care service providers; sponsors of clinical trials of new potential therapies; employers; and educators will all benefit from North Carolina's participation in MD STARnet. The information collected will improve understanding of the number of people affected by MDs in this region; the distribution of MDs among different racial and ethnic groups; the quality of life experienced by those living with MDs; the social services that families of those affected with MDs are receiving; the costs to NC residents with MD to receive care; and gaps in their access to care.

Who is leading North Carolina's MD STARnet program? +

RTI International and UNC Chapel Hill are working together to establish and conduct active population-based surveillance and long-term follow up of muscular dystrophies in the Piedmont region of North Carolina.

What happens to the information that MD STARnet NC team learns? +

A summary of what we learn will be shared with patient and caregiver communities, public health agencies, clinicians, researchers, policy makers, health advocacy groups and other stakeholders. This summary will include general information, for example how many people live in the Piedmont region have a MD, and lay summaries of research publications in professional journals. The summary will not include any names of anyone whose data has been collected.

Who are MD STARnet supporters in North Carolina? +

  • Carolinas HealthCare System
  • Duke University
  • Facioscapulohumeral Muscular Dystrophy Society
  • Muscular Dystrophy Association
  • Myotonic Dystrophy Foundation
  • North Carolina Neurological Society
  • North Carolina Pediatric Society
  • Parent Project Muscular Dystrophy
  • University of North Carolina at Chapel Hill
  • Wake Forest Baptist Health