Learning More by Taking a Closer Look at DBA!

CDC has been a wonderful partner, working with the DBA community to improve surveillance, outreach, and treatment for DBA patients, while also learning whether similar strategies can be applied to other rare diseases populations. Overall goals include:

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

 

Successes & Future Goals!

New and Improved Patient Resources & Clinical Care Tools!

CDC has partnered with DBA doctors, nurses and families to develop new and improved resources available to DBA patients and doctors worldwide that are helping DBA patients live better lives!

 

DBA Brochures & Fact Sheets

Reaching patients and medical providers across the country and around the world to advance DBA diagnosis and the understanding of current resources, treatments and clinical trials available for DBA patients. Download Brochure>> Download Fact Sheets>>

 

DBA Clinical Care Guidelines

An international collaboration of the latest opinions on diagnosis and managing the care of DBA patients. This document was published in the British Journal of Hematology and is now available ONLINE

 

Make your Own DBA Treatment Notebook!

Download the pages created to form a specialized DBA notebook that can serve as a template for patients and families to document their treatment regimen/ impacts from treatment/ general notes about patient’s daily medical situations/ improvements, set-backs, etc.

 

DBA Nurse Hotline

Provides dedicated “on call” DBA nurses at the Centers for patient inquiries 1-877-DBA-NURSE

 

DBA Centers

CDC has assisted with the growth of DBA Centers around the country including the University of Texas Southwestern Medical Center, Stanford University Medical Center, Children’s Hospital Boston, and Schneider Children’s Hospital in NY.

CDC’s efforts have also helped encourage patient enrollment with the Diamond Blackfan Anemia Registry  The Registry gathers important health information about people with DBA, which are leading to findings that are serving as a valuable resource for scientific research to better understand DBA genetics, disease development, remission trends and improved treatment options.

 

What’s Next?

Maximizing Surveillance and Patient Outreach Methods

CDC is currently working with the University of Texas Southwestern Medical Center and Stanford University Medical Center to extend outreach to a more diverse network of medical professionals to help identify more DBA patients, both children and adults, to help CDC gain a more complete understanding of the patient population and to help ensure DBA patients are receiving the information and resources they need to improve their quality of life.  These efforts will also lead to a better understanding of iron overload issues, how DBA impacts bone development and hormone issues, evaluating remission trends, and understanding the rate of birth defects and secondary disease development.

 

Transition from Pediatrics to Adulthood

We are hoping to work with CDC to improve the information and resources available to DBA patients as they transition from pediatrics to adulthood. Goals include using best practices to develop new resources that will provide guidance to patients and families through many stages of a patient’s life that will improve their life choices and maximize their quality of life.  Areas of focus will include information to find suitable adult doctors, guides for managing DBA independently, understanding long term development of the disease and treatment use, and reproductive options.

 

Improving Patient Resources

CDC’s efforts continually involve updating and improving information resources available to the DBA patient population and the medical community.  As an example, CDC is currently working to create a one-page version of the Clinical Care Guidelines for easier patient and doctor referral.