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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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