RECRUITING

The Congenital Dyserythropoietic Anemia Registry (CDAR)

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

The Congenital Dyserythropoietic Anemia Registry (CDAR)

Quick Facts

Study Start:2016-08-29
Study Completion:2031-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02964494

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.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosis of Congenital Dyserythropoietic Anemia (CDA), whether a genetic mutation is identified or not
  2. * Evidence of congenital anemia/jaundice or a positive family history
  3. * Evidence of ineffective erythropoiesis
  4. * Typical morphological appearance of bone marrow erythroblasts
  5. * All ages (ages 0-99)
  1. * Diagnosis of cancer
  2. * Myelodysplasia
  3. * Secondary dyserythropoiesis: e.g.; vitamin B12 deficiency or drug-related.

Contacts and Locations

Study Contact

Hotline
CONTACT
513-636-6770

Principal Investigator

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

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: Children's Hospital Medical Center, Cincinnati

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

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

Study Start Date2016-08-29
Study Completion Date2031-01

Study Record Updates

Study Start Date2016-08-29
Study Completion Date2031-01

Terms related to this study

Additional Relevant MeSH Terms

  • Congenital Dyserythropoietic Anemia (CDA)