Membership is open to all DBA patients and their families.
Please contact us to check on the status of your membership.
Diamond Blackfan Anemia Foundation, Inc. A family operated charitable organization.
The research is ongoing!!
The metoclopromide (Reglan) protocol, a multicenter study, will open soon. Please check this website for upcoming details.
Diamond Blackfan Anemia Registry of North America (DBAR)

Diamond Blackfan Anemia (DBA) is an extremely rare, severe anemia of childhood. It is estimated that there are only 25-30 new cases a year in the US and Canada. As such, there are gaps in the understanding of the natural history of this disorder. For this reason, the Diamond Blackfan Anemia Registry of North America was established in 1993 to collect accurate clinical and demographic data on DBA patients and their families. Headquartered at Schneider Children’s Hospital in New York, the DBAR is a research organization dedicated to acquiring, analyzing and disseminating information on Diamond Blackfan anemia to affected individuals, their families and medical professionals. The DBAR has collected information on over 400 patients in its database.

• The DBAR collects confidential data on patients with DBA in the US and Canada.
• Patients are enrolled with the help of their hematologists.
• After signed informed consent is obtained from the patient (or his/her parent,
   if the patient is a minor), the patient is enrolled in the DBAR.
• The patient (or his/her parent) completes a detailed questionnaire,
   with the help of their physician(s).
• Additional information is obtained with the help of medical records, laboratory results
   and pathology reports and periodic telephone interviews.
• Family members are asked to respond on behalf of previously enrolled, deceased individuals.