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NCT07477197Recruiting

Heart Institute Biobank & Registry for Adult Congenital Heart Disease and Related Disorders

Source: ClinicalTrials.gov · Last updated 17 Mar 2026

Brief summary (registry, in English)

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.

Status (registry)
Recruiting
Study type
Observational
Enrollment
5000 (estimated)
First submitted
5 Mar 2026
Start date
1 Jul 2021
Primary completion date
1 Jan 2050
Lead sponsor
Children's Hospital Medical Center, Cincinnati
NCT number
NCT07477197

What you commit to

  • Study type: Observational
  • Planned participants: 5000
  • From 1 Jul 2021 to the primary completion date, 1 Jan 2050
  • 1 site in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Prior treatment

  • Overnight hospitalization for non-obstetric reason with discharge in the prior 30 days.

Other

  • 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.

Who the study is looking for

  • 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.
  • Additionally, a cohort (Control group A) of control subjects will be enrolled, again ≥16 years-old, self-reported non-smokers without a known history of diabetes mellitus, myocardial infarction, stroke, heart failure, or chronic kidney disease. These controls will be either:
    • 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.
  • A cohort (Control group B) of comparison subjects who do not have CHD, but have a diagnosis of heart failure or pulmonary hypertension.

Age in the registry: 16 years to - · Sex: All · Accepts healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (1)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Children's Hospital Medical Center, Cincinnati
Coordinator of this site? Confirm its status
CincinnatiUnited StatesRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.