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The Congenital Dyserythropoietic Anemia Registry (CDAR)

Children's Hospital Medical Center, Cincinnati · NCT02964494

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
10000
US sites recruiting
1
Study start
August 29, 2016
Record last updated
June 16, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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.

Conditions: Congenital Dyserythropoietic Anemia (CDA)

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • 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)

Exclusion Criteria

  • 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.

Recruiting US locations

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, OH 45229

    Site contact: Hotline · 513-636-6770 · theodosia.kalfa@cchmc.org

Study contacts (from the official record)

  • Hotline · 513-636-6770
All healthy volunteers studies in Ohio →
The Congenital Dyserythropoietic Anemia Registry (CDAR) (NCT02964494) | Bored Studies