Diamond Blackfan Anemia Registry of North America
Director: Adrianna Vlachos, MD
Co-Director: Jeffrey M. Lipton, MD, PhD
Coordinator: Eva Atsidaftos, MA
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 Cohen Children’s Medical 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 500 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.
To enroll please contact:
Eva Atsidaftos, M.A., Clinical Coordinator
Cohen Children’s Medical Hospital
269-01 76th Ave.
New Hyde Park, NY 11040
Toll-free Telephone: 1-888-884-DBAR (3227)
TEL: 1-(516) 562-1504
FAX: 1-(516) 562-1599
E-Mail Address: firstname.lastname@example.org
For more information about DBAR, please go to www.dbar.org.