Status:
RECRUITING
Diamond Blackfan Anemia Registry (DBAR)
Lead Sponsor:
Northwell Health
Conditions:
Anemia
Blood Disease
Eligibility:
All Genders
Brief Summary
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).
Detailed Description
BACKGROUND: Diamond Blackfan anemia (DBA) is a heterogeneous genetic disorder characterized by pure red cell aplasia, congenital anomalies, a predisposition to pancytopenia and myelodysplasia as well...
Eligibility Criteria
Inclusion
- 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
Exclusion
- Any subject identified as having another bone marrow failure syndrome (eg. Fanconi anemia, dyskeratosis congenita, Shwachman Diamond syndrome, etc.) will be excluded.
Key Trial Info
Start Date :
September 1 2004
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
April 1 2026
Estimated Enrollment :
900 Patients enrolled
Trial Details
Trial ID
NCT00106015
Start Date
September 1 2004
End Date
April 1 2026
Last Update
November 14 2024
Active Locations (1)
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1
Cohen Children's Medical Center of NY
New Hyde Park, New York, United States, 11040