Diamond Blackfan Anemia Registry (DBAR) of North America

Director: Adrianna Vlachos, MD | Co-Director: Jeffrey M. Lipton, MD, PhD

Summary

Diamond Blackfan Anemia syndrome is an extremely rare, severe anemia of childhood. Approximately only 25-40 new cases per year occur 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 syndrome 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 DBA syndrome 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 syndrome 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 into 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, pathology reports, and periodic telephone interviews.
  • Family members are asked to respond on behalf of previously enrolled, deceased individuals.

To enroll please contact:

DBAR Clinical Research Coordinator
Cohen Children’s Medical Hospital
269-01 76th Ave.
Room 255
New Hyde Park, NY 11040
Toll-free Telephone: 1-888-884-DBAR (3227)
TEL: 1-(516) 562-3757
FAX: 1-(516) 562-1599
E-Mail Address: DBARegistry@northwell.edu

For more information about DBAR, please go to www.dbar.org.