RECRUITING
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The Congenital Dyserythropoietic Anemia Registry (CDAR)
The investigators propose the creation and maintenance of a comprehensive registry for patients with the diagnosis of Congenital Dyserythropoietic Anemia (CDA) in North America. The goal of this registry will be to collect long-term confidential data on patients with CDA in the US, Canada, and Mexico and create 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)
🗓️ Study Start (Actual) 29 August 2016
🗓️ Primary Completion (Estimated) July 2026
✅ Study Completion (Estimated) January 2031
👥 Enrollment (Estimated) 10000
🔬 Study Type OBSERVATIONAL
📊 Phase N/A
Locations:
📍 Cincinnati, Ohio, United States

📋 Eligibility Criteria

Description

    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.
Ages Eligible for Study: N/A to N/A (CHILD, ADULT, OLDER_ADULT)
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: Yes

🗓️ Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

  • First Submitted 4 October 2016
  • First Submitted that Met QC Criteria 15 November 2016
  • First Posted 16 November 2016

Study Record Updates

  • Last Update Submitted that Met QC Criteria 9 January 2024
  • Last Update Posted 10 January 2024
  • Last Verified January 2023
I'm interested ...!!