MD CARE Act

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107th United States Congress
Citation
Territorial extent
Considered by
Enacted by	107th United States Congress
Passed
Enacted
Considered by
Enacted by

The Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, commonly known as the MD CARE Act, is a United States federal law that was enacted to enhance and coordinate research, education, and care for individuals with muscular dystrophy. The Act was signed into law by President George W. Bush on December 18, 2001, and is codified in the Public Health Service Act.

Background

Muscular dystrophy is a group of genetic disorders characterized by progressive muscle weakness and degeneration. The most common form, Duchenne muscular dystrophy, primarily affects boys and leads to severe disability and early death. Prior to the MD CARE Act, research and resources dedicated to muscular dystrophy were limited and fragmented.

Provisions of the Act

The MD CARE Act aimed to address these issues by:

• Establishing the Muscular Dystrophy Coordinating Committee (MDCC) to coordinate activities across the National Institutes of Health (NIH) and other federal agencies.
• Mandating the development of a comprehensive plan for conducting and supporting research and education on muscular dystrophy.
• Requiring the Centers for Disease Control and Prevention (CDC) to expand and intensify data collection on muscular dystrophy.
• Providing grants to public and nonprofit private entities to establish Centers of Excellence for research and training in muscular dystrophy.

Impact

Since its enactment, the MD CARE Act has significantly increased federal funding for muscular dystrophy research. It has led to the establishment of several Centers of Excellence, which have advanced the understanding of the disease and improved patient care. The Act has also facilitated collaboration among researchers, clinicians, and patient advocacy groups.

Amendments and Reauthorizations

The MD CARE Act has been reauthorized and amended several times to expand its scope and funding:

• The MD CARE Act Amendments of 2008 (Public Law 110-361) enhanced the focus on translational research and the development of therapies.
• The MD CARE Act Reauthorization of 2014 (Public Law 113-166) further increased funding and emphasized the importance of patient registries and data sharing.

Also see

• Muscular dystrophy
• Duchenne muscular dystrophy
• National Institutes of Health
• Centers for Disease Control and Prevention
• Genetic disorders