Diamond Blackfan Anemia Registry
Diamond Blackfan Anemia Registry of North America (DBAR) The DBAR was established in 1993 to improve the understanding of DBA. The DBAR collects clinical data on DBA patients and their families and offers participation in research protocols.
Diamond Blackfan Anemia Registry of North America (DBAR)
Steven & Alexandra Cohen Children’s Medical Center of New York
269-01 76th Ave., Room 255
New Hyde Park, NY 11040
Phone: (516) 562-1504
Toll-free number: 1-888-884-DBAR (3227)
Director: Adrianna Vlachos, MD
Co-Director: Jeffrey M. Lipton, MD, PhD
Eva Atsidaftos, MA
Diamond Blackfan Anemia (DBA) is an extremely rare, severe anemia of childhood. It is estimated that there are only about 30 new cases per 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 Steven and Alexandra 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 over 600 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.
- 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.