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Registry of Congenital Dyserythropoietic Anemia (CDA)

L

Lille Catholic University

Status

Unknown

Conditions

Congenital Dyserythropoietic Anemia

Treatments

Other: Collection of data and genetic analysis

Study type

Observational

Funder types

Other

Identifiers

NCT03983629
OBS-0020

Details and patient eligibility

About

Congenital dyserythropoietic anemia is a heterogeneous inherited disease. Hyperplasic erythropoiesis is ineffective and associated with morphological abnormalities of some of the erythroblasts that form the basis of cytological classification. The cumulative incidence is not very clear, but varies between countries from 0.08 million in Scandinavia to 2.6 cases/million inhabitants in Italy where it appears to be the most reported.

The common manifestation is moderate chronic congenital anemia. This anaemia is either normocytic or discreetly macrocytic, non-regenerative or inappropriate regarding anaemia, contrasting with signs of hemolysis with moderate unconjugated hyperbilirubinemia. Diagnosis is usually made in the pediatric period, but because of the great heterogeneity, the diagnosis sometimes may be delayed. Splenomegaly and jaundice are mostly present. Secondary hemochromatosis is common in the absence of transfusion due to hyper-intestinal absorption of iron induced by the dyserythropoiesis.

The transmission mode for Type I and II is autosomal recessive, while it is autosomal dominant or sporadic for Type III.

Several clinical questions remain concerning this disease :

  • the median survival of patients is not well known, neither the causes of death
  • benefit/risk of splenectomy
  • iron overload quantification and consequences

The idea is to stablish a French registry of congenital dyserythropoietic anemia in order to help to understand the correlation between phenotype and genotype of this disease.

Enrollment

200 estimated patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria

  • Patient with confirmed CDA
  • No opposition to the use of health data for research purposes

Exclusion criteria

  • Patient opposed to participate in the study

Trial design

200 participants in 1 patient group

CDA patients
Treatment:
Other: Collection of data and genetic analysis

Trial contacts and locations

1

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Central trial contact

Amélie Lansiaux, MD, PhD; Jean-Jacques Vitagliano, PhD

Data sourced from clinicaltrials.gov

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