The Congenital Dyserythropoietic Anemia Registry (CDAR)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorChildren's Hospital Medical Center, Cincinnati
About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
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
Disqualifiers
Diagnosis of cancer
Myelodysplasia
Secondary dyserythropoiesis: e.g.; vitamin B12 deficiency or drug-related.
Trial population
Congenital Dyserythropoietic Anemia (CDA)
Trial design
Design model
Other
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Age and symptoms at presentation and/or diagnosis
Clinical and laboratory information will be collected by the patient and the referring physician with questionnaires in order to obtain the natural history of the disease, including correlations, epidemiology, and biology of the different types of CDA.
Time frame
From study entry to >15 years2
Degree of anemia
Clinical and laboratory information will be collected by the patient and the referring physician with questionnaires in order to obtain the natural history of the disease, including correlations, epidemiology, and biology of the different types of CDA.
Time frame
From study entry to >15 years3
Clinical course during
infancyClinical and laboratory information will be collected by the patient and the referring physician with questionnaires in order to obtain the natural history of the disease, including correlations, epidemiology, and biology of the different types of CDA.
Time frame
From study entry to >15 years4
Growth and development, endocrinologic evaluation, skeletal
dysplasiasClinical and laboratory information will be collected by the patient and the referring physician with questionnaires in order to obtain the natural history of the disease, including correlations, epidemiology, and biology of the different types of CDA.
Time frame
From study entry to >15 yearsSponsors and contacts
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Source ClinicalTrials.gov