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Diamond Blackfan Anemia (DBA) |
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Clinical Resource Center Network
CDC is working with a network of Diamond Blackfan anemia (DBA)
clinical resource centers to advance research and improve
the quality of life of people with DBA. At these centers,
specialists from many fields work closely with local health
care providers to meet patients’ individual needs. The
clinical resource center network aims to:
- Provide specialized health services
to help prevent and reduce complications of DBA.
- Learn whether the care received at
these centers makes a difference in the lives of people
with DBA.
- Increase awareness of DBA among
other doctors to improve early diagnosis of people with
DBA.
Gather important health information
about people with DBA by encouraging patients to enroll
in the Diamond Blackfan Anemia
Registry. This information will help support
research on the genetics, treatment, and the way DBA
effects people with this condition.
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Using DBA to Learn More
CDC’s work with DBA is intended to improve surveillance,
outreach, and treatment for DBA, and learn whether we
can use similar strategies for other rare diseases. For
example:
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Identify the best ways to educate
and increase awareness among doctors about rare and
complex diseases.
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Determine effective ways to use
outreach and health monitoring to coordinate care for
people with complex diseases.
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Increase awareness about how
certain genetic conditions may contribute to other
diseases, like cancer, or medical complications, such as
not responding to treatment.
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Date:
November 08, 2007
Content source: National Center on Birth Defects and Developmental
Disabilities
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