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Massive gene hunt aims to unlock secrets of heart birth defects

NCT ID NCT01196182

Knowledge-focused Sponsor: Children's Hospital Medical Center, Cincinnati Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is collecting DNA and health information from 32,000 people with congenital heart defects. Researchers hope to find genetic causes and understand why outcomes vary. No treatment is being tested—this is a research study to gather knowledge.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this could reveal genetic causes of congenital heart defects and help predict outcomes, guiding future treatments.
What could go wrong
This is an observational study, not a treatment trial. It may not directly benefit participants, and findings may take years to apply.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 32,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Nov 2010

Expected to finish

Dec 2032

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

While all patients with pediatric cardiovascular disease and adults with congenital heart disease are of interest, the study will initially focus on four CHD anatomic classifications: * Atrial septal defects * Conotruncal abnormalities * Left-sided obstructive lesions * Heterotaxy Whenever possible, the study will recruit "trios" of participants--children, mothers and fathers-- as well as extended family members when appropriate and feasible.

Ages

Up to 99 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: • Signed consent form Exclusion Criteria: * Isolated patent foramen ovale * Isolated prematurity-associated patent ductus arteriosus

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Conditions

The condition(s) this trial relates to.

congenital heart disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Congenital heart defects

Contacts and locations

Locations

  • Brigham & Women's Hospital

    Boston, Massachusetts, 02115, United States

  • Children's Healthcare of Atlanta

    Atlanta, Georgia, 30342, United States

  • Children's Hospital Boston

    Boston, Massachusetts, 02115, United States

  • Children's Hospital Los Angeles

    Los Angeles, California, 90027, United States

  • Children's Hospital Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • Cohen Children's Medical Center New York

    New Hyde Park, New York, 11040, United States

  • Columbia University Medical Center

    New York, New York, 10032, United States

  • Mount Sinai School of Medicine

    New York, New York, 10029, United States

  • Stanford University

    Palo Alto, California, 94304, United States

  • University College London

    London, WC1N3JH, United Kingdom

  • University of California, San Francisco

    San Francisco, California, 94158, United States

  • University of Michigan Health

    Ann Arbor, Michigan, 48109, United States

  • University of Rochester

    Rochester, New York, 14642, United States

  • University of Utah

    Salt Lake City, Utah, 84113, United States

  • Yale University

    New Haven, Connecticut, 06520, United States

More trials for these conditions

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