Diamond Blackfan Anemia Registry (DBAR)
This study is creating a registry for people with Diamond Blackfan Anemia (DBA), a rare inherited blood disorder where the bone marrow doesn't make enough red blood cells. The goal is to better understand how DBA affects people, including how common it is and its biology. You can join if you have been diagnosed with DBA, which means you have anemia that started early in childhood, low red blood cell precursors in your bone marrow, and low reticulocytes (young red blood cells). The study aims to enroll 900 participants to help researchers learn more about this condition.
- Study design
- This is an observational study, meaning researchers will collect information about participants over time. It aims to include 900 participants.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- The primary goal of understanding the epidemiology and biology of DBA will be measured yearly.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Diamond Blackfan Anemia Registry (DBAR)
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Adrianna Vlachos, MD · PRINCIPAL_INVESTIGATOR · Cohen Children's Medical Center of NY/Feinstein Institutute for Medical Research
- Jeffrey M Lipton, MD, PhD · STUDY_CHAIR · Cohen Children's Medical Center of NY/Feinstein Institute for Medical Research
Who to contact
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Do you actually qualify for this trial?
Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.
Inclusion
Exclusion
What this trial measures
- Understanding the epidemiology and biology of Diamond Blackfan anemiayearly
Epidemiology