A repository of biospecimens and detailed phenotypic information collected longitudinally from adults with congenital heart disease and related conditions, with an aim to facilitate future research on biologic mechanisms of underlying disease, compensation and deterioration; biologic correlates of patient experience and functional status; associations between clinical characteristics and various biomarkers; and predictors of clinical outcomes.
Any person ≥ 16 years-old suspected of having or diagnosed with congenital heart disease (CHD), other cardiovascular disease (CVD), pulmonary hypertension, connective tissue disease, or genetic syndrome/diagnosis.
A family member or other person accompanying a patient to a clinical encounter; or,
A volunteer recruited via an advertisement; or,
Another person who volunteers to enroll in HIBR-ACHD.
Unable to provide informed consent/assent personally or via a legal guardian.
Considered unsafe to collect the biospecimen determined by either a clinical provider or an HIBR-ACHD investigator.
Overnight hospitalization for non-obstetric reason with discharge in the prior 30 days.
Participants will include individuals aged 16 years or older who are suspected of having or diagnosed with congenital heart disease (CHD), other cardiovascular disease, pulmonary hypertension, connective tissue disease, or a genetic condition; healthy volunteers, and comparison participants without CHD but with a diagnosis of heart failure or pulmonary hypertension.
Cohort
Prospective
Not listed
Successful establishment of biospecimen repository
Defined as the number and type of biospecimens collected and successfully linked with corresponding clinical and phenotypic data.
Longitudinal biospecimen availability
Number of participants with repeated biospecimen collections across multiple timepoints.
Event-based biospecimen collection completeness
Availability of biospecimens collected before, during, and after defined clinical interventions (e.g., surgery, exercise testing).
Data completeness of linked clinical phenotypes
Proportion of participants with complete longitudinal clinical, demographic, and phenotypic datasets suitable for research.
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