The Congenital Dyserythropoietic Anemia Registry (CDAR)

Description

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)

Study Overview

Study Details

Study overview

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.

The Congenital Dyserythropoietic Anemia Registry (CDAR)

The Congenital Dyserythropoietic Anemia Registry (CDAR)

Condition
Congenital Dyserythropoietic Anemia (CDA)
Intervention / Treatment

-

Contacts and Locations

Cincinnati

Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States, 45229

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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)
  • * Diagnosis of cancer
  • * Myelodysplasia
  • * Secondary dyserythropoiesis: e.g.; vitamin B12 deficiency or drug-related.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Children's Hospital Medical Center, Cincinnati,

Theodosia Kalfa, MD, PhD, PRINCIPAL_INVESTIGATOR, Children's Hospital Medical Center, Cincinnati

Study Record Dates

2031-01