We at the Centers for Disease Control and Prevention (CDC) are committed to improving the lives of people with muscular dystrophy (MD) through research and health education. Our work identifies and reduces disparities in access to health care and improves developmental outcomes for people with the condition. In the past, most of CDC’s work has been on Duchenne and Becker muscular dystrophy (DBMD ). New projects will include other muscular dystrophies as well.
CDC supports the Muscular Dystrophy Surveillance Tracking and Research Network, known as MD STARnet. MD STARnet is collecting critical information about muscular dystrophy that will improve the care for people living with and affected by the condition. This program is unique because it comprises the only health care research data captured in the United States on all people with Duchenne and Becker muscular dystrophy who live in certain areas (Arizona, Colorado, Georgia, Hawaii, Iowa, and western New York).
Education and Outreach
Parent Project Muscular Dystrophy
A long delay between having symptoms of muscular dystrophy and getting a diagnosis causes stress among those affected by muscular dystrophy and their families and caregivers. Health care professionals might advise families to take a “wait-and-see” approach, or families might believe their child will grow out of the symptoms.
CDC has funded Parent Project Muscular Dystrophy (PPMD) to decrease the time between initial signs and first diagnosis. PPMD established the National Task Force for the Early Identification of Neuromuscular Disorders to help health care professionals identify childhood muscle weakness early. The task force has created a website with tools to assist health care professionals in identifying, testing, and referring children with muscle weakness. The site also includes a video library of clips showing specific neuromuscular features, and resources for testing and referral.
Care Considerations for Duchenne Muscular Dystrophy
CDC convened a group of experts as part of a multiyear project to develop diagnosis and care considerations for people with Duchenne muscular dystrophy (DMD)1,2. This collaboration across government agencies, clinicians, scientists, volunteer health agencies, and advocacy organizations led to care considerations that were published in early 2010 in The Lancet Neurology. Several advocacy groups subsequently used this publication to produce a Duchenne muscular dystrophy guide for families.
Guidelines for Other Forms of Muscular Dystrophy
(CDC) has funded the American Academy of Neurology (AAN) to develop guidelines for diagnosing, treating, and preventing four other forms of muscular dystrophy. The new guidelines will focus on myotonic dystrophy, limb–girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, and congenital muscular dystrophy. The AAN will develop these guidelines based on evidence gathered from research published in peer-reviewed scientific journals. These recommendations will be distributed to clinicians who diagnose and treat muscular dystrophy through the AAN’s own scientific journal and other channels.
If you have questions about muscular dystrophy, please e-mail us at: firstname.lastname@example.org.
- Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol; 2010 Jan; 9(1):77‑93.
- Bushby K, Finkel R, Birnkrant DJ, et al. (2010) Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol; 2010 Jan; 9(2):177-189.
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