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Diamond Blackfan Anemia (DBA)
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 Northwell 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.