Thank you for visiting the Diamond Blackfan Anemia Registry website. As we try to make our way through the other side of the COVID pandemic, we are focusing on possible new advancements in DBA research. Progress is being made in gene therapy, for example, and we need to make sure that each patient with DBA has their genetic mutation identified. We also need an update on your clinical status. Are you steroid dependent? Are you transfusion dependent? Or, are you in remission? The answers to these questions can give researchers clues to management and therapy. Please either scan/email your update questionnaire to us or call us toll-free at (888) 884-3227.
Update questionnaires have been emailed or mailed to all DBAR participants. If you have not received your questionnaire it is because we have an old email address or an old mailing address. Please call us with an updated contact.
Thank you and please be safe and stay healthy always.
Your DBAR Team