Survey on Adults Living with Muscular Dystrophy

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MD Starnet

The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) is conducting a survey to better understand how certain health issues affect adults living with muscular dystrophy. The survey focuses on how they experience certain health issues such as COVID-19, flu vaccination, pain, fatigue, pregnancy, and infertility.

Through this survey, MD STARnet researchers hope to answer the following questions:

  • How many adults with muscular dystrophy have had COVID-19, how severe was it, and how many were vaccinated? How many adults have received flu vaccinations? What were reasons for not getting vaccinated?
  • How many adults have chronic pain and fatigue related to their muscular dystrophy and how do they manage their pain and fatigue (medications and other treatments)? How does their pain affect the activities they do daily?
  • What are the most common pregnancy complications and outcomes among adult women with muscular dystrophy? How do muscular dystrophy symptoms change during or after pregnancy? What are the fertility issues in adult men and women with muscular dystrophy and the treatments or interventions provided?

Understanding the answers to these questions can help inform clinical management of these issues and improve the lives of people with muscular dystrophy.

Understanding the answers to these questions can help inform clinical management of these issues and improve the lives of people with muscular dystrophy.

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Who is being asked to complete this survey?

  • Adults who are 18 years of age and older who are living with one of the following types of muscular dystrophy:
    • Duchenne muscular dystrophy
    • Becker muscular dystrophy
    • Myotonic dystrophy
    • Facioscapulohumeral muscular dystrophy
    • Limb-girdle muscular dystrophy
    • Congenital muscular dystrophy
    • Emery-Dreifuss muscular dystrophy
    • Distal muscular dystrophy
  • Adults should also be residents of North Central Florida, Iowa, Central North Carolina, Western New York, South Carolina, Utah, or Eastern Virginia

If you are an adult with one of these types of muscular dystrophy living in an area listed above, MD STARnet researchers may send you a letter asking you to complete a survey. The survey can be completed online, by mailing back a paper version, or by phone appointment with an MD STARnet study coordinator. Your participation in this survey can help improve health and quality of life for people living with muscular dystrophy.

Findings from the survey will be shared with the muscular dystrophy community without sharing individuals’ private information.

If you have questions about the survey or would like more information, please contact the MD STARnet study coordinator in your state.

Contact information for MD STARnet sites

North Central Florida: Magali Jorand-Fletcher (352) 294-8845

Iowa: Julie Stutler (319) 335-1694

Western New York: Katherine Fox (888) 692-0906

Central North Carolina: Christine Hill (770) 407-4941

South Carolina: Christine Hill (770) 407-4941

Utah: Kalista Vordos (801) 587-7370

Eastern Virginia: Miles Peay (804) 828-6065