ACTIVE_NOT_RECRUITING

Congenital Heart Disease GEnetic NEtwork Study (CHD GENES)

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

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.

Official Title

Congenital Heart Disease GEnetic NEtwork Study (CHD GENES)

Quick Facts

Study Start:2010-11-15
Study Completion:2032-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:ACTIVE_NOT_RECRUITING

Study ID

NCT01196182

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 to 99 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. * Isolated patent foramen ovale
  2. * Isolated prematurity-associated patent ductus arteriosus

Contacts and Locations

Principal Investigator

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
Yufeng Shen, PhD
PRINCIPAL_INVESTIGATOR
Columbia University Medical Center, New York NY
Shuo Wang, MD
PRINCIPAL_INVESTIGATOR
Children's Los Angeles

Study Locations (Sites)

Children's Hospital Los Angeles
Los Angeles, California, 90027
United States
Stanford University
Palo Alto, California, 94304
United States
University of California, San Francisco
San Francisco, California, 94158
United States
Yale University
New Haven, Connecticut, 06520
United States
Children's Healthcare of Atlanta
Atlanta, Georgia, 30342
United States
Brigham & Women's Hospital
Boston, Massachusetts, 02115
United States
Children's Hospital Boston
Boston, Massachusetts, 02115
United States
University of Michigan Health
Ann Arbor, Michigan, 48109
United States
Cohen Children's Medical Center New York
New Hyde Park, New York, 11040
United States
Mount Sinai School of Medicine
New York, New York, 10029
United States
Columbia University Medical Center
New York, New York, 10032
United States
University of Rochester
Rochester, New York, 14642
United States
Children's Hospital Philadelphia
Philadelphia, Pennsylvania, 19104
United States
University of Utah
Salt Lake City, Utah, 84113
United States

Collaborators and Investigators

Sponsor: 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
  • Yufeng Shen, PhD, PRINCIPAL_INVESTIGATOR, Columbia University Medical Center, New York NY
  • Shuo Wang, MD, PRINCIPAL_INVESTIGATOR, Children's Los Angeles

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 Date2010-11-15
Study Completion Date2032-12

Study Record Updates

Study Start Date2010-11-15
Study Completion Date2032-12

Terms related to this study

Additional Relevant MeSH Terms

  • Congenital Heart Defects