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 20-40 new cases per year in the United States and Canada. Because of the rarity of this disorder there are gaps in the understanding of its natural history. For this reason, the Diamond Blackfan Anemia Registry (DBAR) of North America was established in 1991 to collect accurate clinical and demographic data on DBA patients and their families. Headquartered at the Feinstein Institute for Medical Research (part of the North Shore-LIJ Health System and Cohen Children’s Medical Center of 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 almost 700 patients in its database.

• The DBAR collects confidential data on patients with DBA in the US, Canada, and Mexico.
• Patients are enrolled with the help of their hematologists and other physicians (internists and
  pediatricians).
• 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.
• The DBAR also conducts clinical trials.


The Mission of the DBAR

The mission of the DBAR is to be an essential tool for the investigation of the epidemiology and biology of DBA and the conduct of therapeutic trials.