The muscular dystrophies (MDs) are a group of differing genetic conditions that affect how an individual's muscles work. MDs cause a person's muscles to get weaker and break down over time. There are nine major types of MD: Duchenne, Becker, Myotonic, Congenital, Limb Girdle, Emery-Dreifuss, Facioscapulohumeral, Distal, and Oculopharyngeal. These nine MDs vary in the age when symptoms first 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 Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) is a research network involving several states, which are collecting critical information about muscular dystrophies (MDs). In September 2014, North Carolina was added to the MD STARnet project as one of three new states to collect information on individuals living with MDs. 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, have established the MD STARnet project in the Piedmont region of North Carolina.

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.

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.

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.

RTI International and UNC Chapel Hill are working together to establish and conduct active, population-based surveillance and long-term follow up of MDs in the Piedmont region of North Carolina. This surveillance is done in cooperation with the CDC and with the permission of the state of North Carolina Department of Health and Human Services.

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 who live in the Piedmont region have a MD. The summary will not include any names of anyone whose data has been collected. MD STARnet researchers will use the data to answer questions about MDs and their care and publish their results in professional journals. These results will not include any names of anyone whose data has been collected.

• Atrium Health
• 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

• Alamance
• Anson
• Cabarrus
• Caswell
• Chatham
• Davidson
• Davie
• Durham
• Forsyth
• Franklin
• Gaston
• Granville
• Guilford
• Iredell
• Lee
• Lincoln
• Mecklenburg
• Montgomery
• Moore
• Orange
• Person
• Randolph
• Richmond
• Rockingham
• Rowan
• Stanly
• Stokes
• Surry
• Union
• Vance
• Wake
• Warren
• Yadkin