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Diamond Blackfan Anemia Registry (DBAR)

RecruitingObservational study

Who can join

All ages · All sexes

Full eligibility criteria
Inclusion Criteria:

* Patients must meet the diagnostic criteria for DBA which include the following:

  1. Normochromic, usually macrocytic and occasionally normocytic anemia developing early in childhood
  2. Reticulocytopenia
  3. Normocellular bone marrow with a selective deficiency of red cell precursors
  4. Normal or slightly decreased leukocyte count
  5. Normal or often increased platelet count
  6. Or, a confirmed mutation in one of the identified DBA genes

Exclusion Criteria:

* Any subject identified as having another bone marrow failure syndrome (eg. Fanconi anemia, dyskeratosis congenita, Shwachman Diamond syndrome, etc.) will be excluded.

About the study

The purpose of this study is to maintain a comprehensive registry of patients with the rare inherited bone marrow failure syndrome Diamond Blackfan anemia (DBA).

Sponsor: Northwell Health · Participants: 900 · Started: 2004-09

Contact the study team

Official record on ClinicalTrials.gov — NCT00106015

Locations in the U.S.

New YorkCohen Children's Medical Center of NY, New Hyde Park

Conditions

From ClinicalTrials.gov, data retrieved Nov 15, 2026. Each study sets its own eligibility; the study team decides who can join.