Thank you for visiting the Diamond Blackfan Anemia Registry (DBAR) website.

 

 

Diamond Blackfan Anemia has been renamed Diamond Blackfan Anemia Syndrome (DBAS) to include patients who are genetically diagnosed, but do not have anemia.

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New advancements have been made in DBAS research. Progress is being made in gene therapy, for example, so each patient with DBAS should have their genetic mutation identified. Surveillance for development of cancer is also key to management of patients with DBAS.

 

It is also important to update the DBAR of your clinical status. Are you steroid dependent? Are you transfusion dependent? Or, are you treatment independent? Have you had a stem cell transplant? Have you developed cancer of any type?

The answers to these questions give researchers clues to management and therapy.

Please either scan or email your updated questionnaire to us or call us toll-free at (888) 884-3227.

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If you have moved or have changed phone numbers, please call us with updated contact information. 

 

Thank you - we are here to help you.

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Your DBAR Team

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