About Us

Clinical Resource Center Network

CDC is working with a network of Diamond Blackfan anemia (DBA) clinical resource centers to advance DBA 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 the needs of each patient. 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 doctors to improve early diagnosis of people with DBA.
• Gather important health information about people with DBA by asking patients to enroll in the Diamond Blackfan Anemia Registry. This information will help support research on the genetics and treatment of DBA, as well as the way it affects the people who have it.

 

Connecting with Healthcare Providers

CDC staff are working on a project to learn more about DBA and its clinical features. A series of focus groups with health care providers will help to determine the best methods for finding and contacting doctors who care for patients with DBA. These doctors will be asked to take part in CDC’s surveillance program, which will allow for a better understanding of the full spectrum of DBA. This knowledge will help health care providers recognize the disorder and make more accurate diagnoses, resulting in appropriate treatment for these patients. This also might provide more information about the birth defects and cancers that occur more often among patients with DBA than among the general public.

 

Preventing and Reducing Complications

We know there are healthy behaviors that can help to reduce or prevent certain secondary complications among people with DBA. CDC staff are working to develop educational materials about these healthy behaviors for patients, families, and referring physicians. Materials will be translated into languages other than English and research findings will be presented to a variety of audiences to increase understanding and awareness of DBA.

Go to DBA Free Materials page >>

 

Using DBA to Learn More

CDC’s work with DBA is intended to improve surveillance, outreach, and treatment for DBA, and help us to learn whether we can use similar strategies for other rare diseases. This will involve:

• Finding the best ways to educate and increase awareness among doctors about rare and complex diseases.
• Determine effective ways to use outreach and health monitoring to coordinate care for people with complex diseases.
• Increase awareness about how certain genetic conditions might contribute to other diseases, like cancer, or medical complications, such as not responding to treatment.