Diamond Blackfan Anemia Registry (DBAR)

Launched by NORTHWELL HEALTH · Mar 18, 2005

Keywords

ClinConnect Summary

The Diamond Blackfan Anemia Registry (DBAR) is a clinical trial that aims to create a detailed database of patients with Diamond Blackfan anemia (DBA), a rare inherited condition that affects the bone marrow and causes anemia, or a low red blood cell count. This study is currently recruiting participants of all ages and genders who have been diagnosed with DBA. To qualify, participants should have certain symptoms, such as anemia that starts in childhood, low levels of reticulocytes (young red blood cells), and specific findings in their bone marrow.

If you or someone you know has DBA and is interested in joining the registry, you’ll be part of an important effort to better understand this condition. Participants can expect to share their medical history and possibly undergo some tests to confirm their diagnosis. It’s important to note that individuals with other types of bone marrow failure syndromes will not be eligible for this study. By joining this registry, you can help researchers learn more about DBA and potentially improve the care and treatment options for others affected by this condition.

Gender

ALL

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.