Muscular dystrophy has a tremendous impact on individuals and their families, including delays in diagnosis, difficulty accessing care, and high healthcare costs from frequent surgeries and hospitalizations. The Centers for Disease Control and Prevention (CDC) works to improve the health and quality of life for individuals with muscular dystrophy. CDC partners with healthcare professionals, university researchers, patient organizations, and state health departments to better understand muscular dystrophy. Our work focuses on three areas:
- Early identification
- Improving treatment and services
- Investigating the impact of muscular dystrophy on individuals and their families
Early screening, identification, and diagnosis of muscular dystrophy allows individuals and families to plan for the future and make important financial decisions, from choosing a home that is wheelchair accessible, to finding an employer who supports people with disabilities.
Some of the most severe forms of muscular dystrophy begin in early childhood. Many parents spend years taking their child to different doctors before getting a diagnosis of muscular dystrophy. This diagnostic delay can also occur among people who develop muscular dystrophy as adults.
CDC helps develop tools that train healthcare professionals to recognize the signs of muscular dystrophy. Read about CDC-funded diagnostic tools for muscular dystrophy »
Improving treatment and services
Treatment and care for muscular dystrophy varies. In many cases, there are no standard treatment guidelines. CDC works with partners to develop treatment standards so that everyone with the condition receives quality health care.
Care Considerations for Duchenne Muscular Dystrophy
CDC convened a group of experts to develop care considerations for Duchenne muscular dystrophy. This collaboration included experts from government agencies, healthcare professionals, and patient advocacy organizations. The group developed guidelines that were published in The Lancet Neurology. From this paper, several patient advocacy organizations went on to produce a Duchenne muscular dystrophy guide for families. Over the next few years, CDC will be updating these recommendations to reflect the latest information from healthcare professionals who treat individuals with muscular dystrophy.
Guidelines for Other Types of Muscular Dystrophy
CDC is funding the American Academy of Neurology (AAN) to develop treatment and care guidelines for myotonic dystrophy, limb–girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, and congenital muscular dystrophy. The AAN will develop these guidelines using evidence from existing medical studies and expert opinion. These guidelines will then be published and given to healthcare professionals who treat individuals with muscular dystrophy.
Investigating the Impact of Muscular Dystrophy on Individuals and their Families
There is a limited amount of accurate information about muscular dystrophy. Muscular dystrophy is rare so people with the condition are hard to find. CDC’s goal is to fill this gap and find new ways to monitor the health status of people living with muscular dystrophy and the quality of the health services they receive. CDC uses state health department information and records from doctors’ offices to determine the number of people with muscular dystrophy, the impact of treatment on their disease, and the impact of their disability on them and their families.
Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet)
MD STARnet is a CDC data collection and research program that analyses information from people living with muscular dystrophy. Most research on muscular dystrophy is done using data from muscular dystrophy medical clinics, which leaves out people who don’t go to one of the clinics. MD STARnet is the only program in the United States that studies everyone with muscular dystrophy in a specific geographic area, not just those who attend muscular dystrophy medical clinics. Using this approach, data from MD STARnet is used by researchers to determine the number of people with muscular dystrophy, and for those affected by the condition:
- Age at diagnosis
- Type of muscular dystrophy
- The most common medications, surgeries and, other treatments
- The progress of the disease
- Impact on the family and caregivers
South Carolina Study for Adolescents and Young Adults with Rare Conditions
CDC is working with the University of South Carolina and the state of South Carolina to answer important questions about the health and well-being of 15-24 year-olds with muscular dystrophy as they transition from adolescence to adulthood.
This project uses data from the South Carolina department of health, department of education, and social service agencies such as Medicaid, and the Vocational Rehabilitation Department. Data being analyzed include health status, education, and participation in state employment programs, whether the adolescents and young adults have other medical conditions besides muscular dystrophy, and frequency and type of health care received.
The South Carolina state data will give CDC researchers a better understanding of how common muscular dystrophy is among adolescents and young adults, what kind of medical care and support services they use, and their overall well-being. Researchers will also learn if this approach can be used in other states.
If you have questions about muscular dystrophy, please e-mail us at: email@example.com.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
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