Congenital Heart Disease Genetic Network Study (CHD GENES)
CHD GENES aims to investigate relationships between genetic factors and phenotypic and clinical outcomes in patients with congenital heart defects (CHD). Participants were over 13,000 individuals with CHD or without CHD but who have a genetic syndrome strongly associated with CHD. Around 18,500 relatives of participants were also recruited. Participants were recruited from clinics and community outreach from multiple study sites across the United States of America. Baseline data collection began in 2010, and participants will be followed up with an annual questionnaire for at least 5 years.
Study design
Cohort, Cohort - primary caregiver and child, Cohort - clinical, Biobank
Number of participants at first data collection
13,646 (participants, as of 2023)
18,433 (relatives, as of 2023)
Recruitment is ongoing
Age at first data collection
Varied (participants)
Varied (relatives)
Participant year of birth
Varied (participants)
Varied (relatives)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2010
Primary Institutions
Cincinnati Children's Hospital Medical Center (CCHMC)
New England Research Institutes
Profile paper DOI
Funders
National Heart, Lung, and Blood Institute (NHLBI)
Ongoing?
Yes
Data types collected
- Interview – unspecified
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- None
- None
- Healthcare data
- Mortality data
Engagement
Keywords
Consortia and dataset groups
