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| Single Gene
Disorders and Disability (SGDD) |
In 2001, Congress authorized
CDC—through the Muscular Dystrophy Community Assistance Research and
Education Amendments of 2001, or the
MD-CARE Act—to develop public
health programs related to muscular dystrophy (MD). In response to
this Act, the Single Gene Disorders and Disability (SGDD) team at
CDC, along with key stakeholders in the muscular dystrophy community
started public health programs for Duchenne/Becker muscular
dystrophy (DBMD), based on priority and need. The initial programs
focus on developing a DBMD tracking system, improving screening and
diagnosis of DBMD, and improving services for people who have DBMD
and their families.
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Surveillance (Tracking)
Researchers working with CDC have set up a system to find and track
people who have DBMD. This system, known as the Muscular Dystrophy
Surveillance Tracking and Research Network (MD STARnet), will gather
information to help answer questions such as:
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How common is DBMD? |
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Is it equally common in
different racial and ethnic groups? |
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What are the early signs and
symptoms of DBMD?
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Screening and diagnosis
CDC is working with partners to improve screening and diagnosis for
DBMD. Research activities aim to answer questions such as:
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Do people understand all
aspects of the screening test? |
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When is a good time to offer
the screening test? |
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What are the important issues
to consider when developing a screening program for a single
gene disorder like DBMD?
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Services for people who have DBMD
and their families
CDC supports several projects to identify the services DBMD patients
and their families need. These projects will help health departments
and health care providers answer questions such as:
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What medical and social
services are families getting? |
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What medical and social
services do families need that are difficult to get? |
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Do different populations
receive different levels of care?
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[Return to Top]
Date: September 1, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities
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