Actively Recruiting
Heart Institute Biobank & Registry for Adult Congenital Heart Disease and Related Disorders
Led by Children's Hospital Medical Center, Cincinnati · Updated on 2026-03-17
5000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are collecting and managing a repository of tissue samples and detailed health information from adults aged 16 and older with congenital heart disease and related conditions. The study aims to support future research on the biological causes of these diseases, how the body compensates or worsens over time, links between clinical features and biomarkers, and factors that predict health outcomes. Control groups include adults without these conditions to provide comparison data. The study involves enrolling adults attending clinical visits at the Heart Institute and potentially other cardiology departments in the future. Data collection includes biospecimens and extensive health information gathered at baseline and repeatedly over time during outpatient visits and procedures. This ongoing approach helps capture changes in health status and patient experiences. Participants will provide samples and information through surveys about symptoms and lifestyle, along with patient-reported outcome measures. The main goal is to establish and maintain a biospecimen repository successfully. Researchers will track the availability of samples over time and collect data longitudinally. The study allows for long-term observation to better understand disease progression and outcomes in these conditions.
CONDITIONS
Brief Title
Heart Institute Biobank & Registry for Adult Congenital Heart Disease and Related Disorders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults aged 16 years or older suspected or diagnosed with congenital heart disease, pulmonary hypertension, connective tissue disease, or other cardiovascular conditions
- Control subjects aged 16 years or older who are non-smokers without diabetes, myocardial infarction, stroke, heart failure, or chronic kidney disease
- Control group participants may be family members, volunteers recruited by advertisement, or others willing to enroll
- Comparison group of adults aged 16 years or older with heart failure or pulmonary hypertension but without congenital heart disease
You will not qualify if you...
- Unable to provide informed consent or assent personally or via a legal guardian
- Considered unsafe to collect biospecimens by a clinical provider or investigator
- Hospitalized overnight for a non-obstetric reason and discharged within the prior 30 days
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Ongoing throughout participant enrollment and follow-up
Participants provide tissue specimens and biological samples during clinical encounters.
Sequential outpatient visits and procedure encounters
Duration - Ongoing throughout participant enrollment and follow-up
Participants complete surveys and patient-reported outcome measures on symptoms and lifestyle over time.
Multiple outpatient visits over time
Trial Site Locations
Total: 1 location
1
Children's Hospital Medical Center, Cincinnati
Cincinnati, Ohio, United States, 45229
Actively Recruiting
Research Team
S
Sasha Opotowsky, MD
L
Lindsay Fist
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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