Congenital Heart Disease GEnetic NEtwork Study (CHD GENES)

Description

Congenital heart defects (CHD) are the most common major human birth malformation, affecting \~8 per 1,000 live births. CHD are associated with significant morbidity and mortality, and are second only to infectious diseases in contributing to the infant mortality rate. Current understanding of the etiology of pediatric cardiovascular disorders is limited. The Congenital Heart Disease GEnetic NEtwork Study (CHD GENES) is a multi-center, prospective observational cohort study. Participants will be recruited from the Pediatric Cardiac Genomics Consortium's (PCGC) centers of the NHLBI-sponsored Bench to Bassinet (B2B) Program. Biological specimens will be obtained for genetic analyses, and phenotype data will be collected by interview and from medical records. State-of-the-art genomic technologies will be used to identify common genetic causes of CHD and genetic modifiers of clinical outcome. To accomplish this, the PCGC will develop and maintain a biorepository of specimens (DNA) and genetic data, along with detailed, phenotypic and clinical outcomes data in order to investigate relationships between genetic factors and phenotypic and clinical outcomes in congenital heart disease.

Conditions

Congenital Heart Defects

Study Overview

Study Details

Study overview

Congenital heart defects (CHD) are the most common major human birth malformation, affecting \~8 per 1,000 live births. CHD are associated with significant morbidity and mortality, and are second only to infectious diseases in contributing to the infant mortality rate. Current understanding of the etiology of pediatric cardiovascular disorders is limited. The Congenital Heart Disease GEnetic NEtwork Study (CHD GENES) is a multi-center, prospective observational cohort study. Participants will be recruited from the Pediatric Cardiac Genomics Consortium's (PCGC) centers of the NHLBI-sponsored Bench to Bassinet (B2B) Program. Biological specimens will be obtained for genetic analyses, and phenotype data will be collected by interview and from medical records. State-of-the-art genomic technologies will be used to identify common genetic causes of CHD and genetic modifiers of clinical outcome. To accomplish this, the PCGC will develop and maintain a biorepository of specimens (DNA) and genetic data, along with detailed, phenotypic and clinical outcomes data in order to investigate relationships between genetic factors and phenotypic and clinical outcomes in congenital heart disease.

Congenital Heart Disease GEnetic NEtwork Study (CHD GENES)

Congenital Heart Disease GEnetic NEtwork Study (CHD GENES)

Condition
Congenital Heart Defects
Intervention / Treatment

-

Contacts and Locations

Los Angeles

Children's Hospital Los Angeles, Los Angeles, California, United States, 90027

Palo Alto

Stanford University, Palo Alto, California, United States, 94304

San Francisco

University of California, San Francisco, San Francisco, California, United States, 94158

New Haven

Yale University, New Haven, Connecticut, United States, 06520

Boston

Brigham & Women's Hospital, Boston, Massachusetts, United States, 02115

Boston

Children's Hospital Boston, Boston, Massachusetts, United States, 02115

New Hyde Park

Cohen Children's Medical Center New York, New Hyde Park, New York, United States, 11040

New York

Mount Sinai School of Medicine, New York, New York, United States, 10029

New York

Columbia University Medical Center, New York, New York, United States, 10032

Rochester

University of Rochester, Rochester, New York, United States, 14642

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

  • * Isolated patent foramen ovale
  • * Isolated prematurity-associated patent ductus arteriosus

Ages Eligible for Study

to 99 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Children's Hospital Medical Center, Cincinnati,

Amy Roberts, MD, PRINCIPAL_INVESTIGATOR, Childrens Hospital Boston

Christine Seidman, MD, PRINCIPAL_INVESTIGATOR, Harvard Medical School, Boston MA

Bruce Gelb, MD, PRINCIPAL_INVESTIGATOR, Mt Sinai School of Medicine, New York NY

Martina Brueckner, MD, PRINCIPAL_INVESTIGATOR, Yale University

Martin Tristani-Firouzi, MD, PRINCIPAL_INVESTIGATOR, University of Utah

Wendy Chung, MD, PhD, PRINCIPAL_INVESTIGATOR, Columbia University Medical Center, New York NY

Jon Cleveland, PRINCIPAL_INVESTIGATOR, Children's Los Angeles

Study Record Dates

2025-12