RECRUITING

Diamond Blackfan Anemia Registry (DBAR)

Conditions

Anemia Blood Disease inherited pure red cell aplasia

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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 purpose of this study is to maintain a comprehensive registry of patients with the rare inherited bone marrow failure syndrome Diamond Blackfan anemia (DBA).

Official Title

Diamond Blackfan Anemia Registry (DBAR)

Quick Facts

Study Start:2004-09

Study Completion:2026-04

Study Type:Not specified

Phase:Not Applicable

Enrollment:Not specified

Status:RECRUITING

Study ID

NCT00106015

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:No

Standard Ages:CHILD, ADULT, OLDER_ADULT

Inclusion Criteria	Exclusion Criteria
* Patients must meet the diagnostic criteria for DBA which include the following: 1. Normochromic, usually macrocytic and occasionally normocytic anemia developing early in childhood 2. Reticulocytopenia 3. Normocellular bone marrow with a selective deficiency of red cell precursors 4. Normal or slightly decreased leukocyte count 5. Normal or often increased platelet count 6. Or, a confirmed mutation in one of the identified DBA genes	* Any subject identified as having another bone marrow failure syndrome (eg. Fanconi anemia, dyskeratosis congenita, Shwachman Diamond syndrome, etc.) will be excluded.

Inclusion Criteria

Exclusion Criteria

* Patients must meet the diagnostic criteria for DBA which include the following:
1. Normochromic, usually macrocytic and occasionally normocytic anemia developing early in childhood
2. Reticulocytopenia
3. Normocellular bone marrow with a selective deficiency of red cell precursors
4. Normal or slightly decreased leukocyte count
5. Normal or often increased platelet count
6. Or, a confirmed mutation in one of the identified DBA genes

* Any subject identified as having another bone marrow failure syndrome (eg. Fanconi anemia, dyskeratosis congenita, Shwachman Diamond syndrome, etc.) will be excluded.

Contacts and Locations

Study Contact

Eva Atsidaftos, MA

CONTACT

718-470-5523

eatsidaf@northwell.edu

Principal Investigator

Adrianna Vlachos, MD

PRINCIPAL_INVESTIGATOR

Cohen Children's Medical Center of NY/Feinstein Institutute for Medical Research

Jeffrey M Lipton, MD, PhD

STUDY_CHAIR

Cohen Children's Medical Center of NY/Feinstein Institute for Medical Research

Study Locations (Sites)

Cohen Children's Medical Center of NY

New Hyde Park, New York, 11040

United States

Collaborators and Investigators

Sponsor: Northwell Health

Adrianna Vlachos, MD, PRINCIPAL_INVESTIGATOR, Cohen Children's Medical Center of NY/Feinstein Institutute for Medical Research
Jeffrey M Lipton, MD, PhD, STUDY_CHAIR, Cohen Children's Medical Center of NY/Feinstein Institute for Medical Research

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 Date2004-09

Study Completion Date2026-04

Study Record Updates

Study Start Date2004-09

Study Completion Date2026-04

Terms related to this study

Keywords Provided by Researchers

inherited pure red cell aplasia

Additional Relevant MeSH Terms

Anemia
Blood Disease