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.

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:

• Identify 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 may contribute to other diseases, like cancer, or medical complications, such as not responding to treatment.