Please share your experiences!

Within the next few months, MD STARnet will send a survey to adults with muscular dystrophy within our study regions. The survey will include questions about your experiences with chronic pain and fatigue, family planning, COVID-19, and vaccinations. The more we know about your experiences, the better we will understand how to improve the lives of people with muscular dystrophy.

You are eligible to participate in the survey if you are 18 years or older, and

• Have been diagnosed with myotonic, facioscapulohumeral, Congenital, Limb-Girdle, Emery-Dreifuss or Distal muscular dystrophy and lived in an MD STARnet study region on or after January 1, 2008 or
• You have Duchenne or Becker muscular dystrophy and were born in a study region on or after January 1, 2000, even if you have since moved.

Eligible individuals who have been identified by MD STARnet will receive a letter inviting them to participate. The letter will explain who you can contact if you have questions and how you can complete the survey. If you think you are eligible but do not receive a letter by September 2023, please click on the Contact Us link above to send us an email.

Surveillance Regions

North Carolina counties included in MD STARnet: 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, and Yadkin.