Diamond Blackfan Anemia Registry (DBAR)

Recruiting now

Conditions studied: Anemia, Blood Disease

In brief

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).

Key facts

Study ID

NCT00106015

Run by

Northwell Health

People needed

900

Starts

2004-09-01

Expected to finish

2030-04-01

Last updated by the study team

2026-04-16

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Patients must meet the diagnostic criteria for DBA which include the following:
• Normochromic, usually macrocytic and occasionally normocytic anemia developing early in childhood
• Reticulocytopenia
• Normocellular bone marrow with a selective deficiency of red cell precursors
• Normal or slightly decreased leukocyte count
• Normal or often increased platelet count
• Or, a confirmed mutation in one of the identified DBA genes

You may not qualify if…

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

Where it is running

• Cohen Children's Medical Center of NY — New Hyde Park, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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