The Congenital Dyserythropoietic Anemia Registry (CDAR)
Recruiting now
Conditions studied: Congenital Dyserythropoietic Anemia (CDA)
In brief
The investigators have created and maintain a comprehensive registry for patients with the diagnosis of Congenital Dyserythropoietic Anemia (CDA) in North America. The goal of this registry is to collect long-term confidential data on patients with CDA in the US, Canada, and Mexico and maintain a bio-repository of de-identified patient blood and bone marrow specimens as a tool for the investigation of epidemiology, natural history, biology, and molecular pathogenetic mechanisms of CDA.
Key facts
- Study ID
- NCT02964494
- Run by
- Children's Hospital Medical Center, Cincinnati
- People needed
- 10000
- Starts
- 2016-08-29
- Expected to finish
- 2031-01-01
- Last updated by the study team
- 2026-06-16
Who can join
Age: any. Sex: any. Healthy volunteers: accepted.
You may qualify if…
- Diagnosis of Congenital Dyserythropoietic Anemia (CDA), whether a genetic mutation is identified or not
- Evidence of congenital anemia/jaundice or a positive family history
- Evidence of ineffective erythropoiesis
- Typical morphological appearance of bone marrow erythroblasts
- All ages (ages 0-99)
You may not qualify if…
- Diagnosis of cancer
- Myelodysplasia
- Secondary dyserythropoiesis: e.g.; vitamin B12 deficiency or drug-related.
- Note1: Patients with rare band 3 (SLC4A1) mutations recently described to be associated with dyserythropoiesis will be eligible since the mechanisms appear to involve direct participation of band 3 in the erythroblast mitosis and cytokinesis.
- Note2: Siblings, parents, and family members of patients with confirmed CDA diagnosis are encouraged to participate in the study.
Where it is running
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (enrolling)
Full record on ClinicalTrials.gov
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