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Hunt for CDH genes launches: 3,000 participants sought

NCT ID NCT00950118

Knowledge-focused Sponsor: Columbia University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This study aims to identify genes that make a person more likely to develop congenital diaphragmatic hernia (CDH), a birth defect where the diaphragm doesn't form properly. Researchers will collect DNA samples from 3,000 people with CDH or a family history of it, along with their families. By understanding the genetic causes, they hope to pave the way for future prevention or treatment.

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 research could identify genetic risk factors for congenital diaphragmatic hernia, pointing toward future prevention or treatment strategies.
What could go wrong
This is an observational genetic study, not a treatment trial. It may take years to translate findings into clinical applications, and the genetic causes may be complex and hard to pinpoint.

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 3,000 people

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

Start date

Jun 2005

Expected to finish

Sep 2026

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

Children/neonates with an unrepaired congenital diaphragmatic hernia Children/neonates with a reparied congenital diaphragmatic hernia Women who are pregnant with a fetus diagnosed with congenital diaphragmatic hernia Individuals with a family history of congenital diaphragmatic hernia

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: * All individuals affected with a congenital diaphragmatic hernia (CDH), or with a family history of a CDH Exclusion Criteria: * Individuals with no personal history of a CDH or family history of a family member affected with congenital diaphragmatic hernia

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Conditions

The condition(s) this trial relates to.

congenital diaphragmatic hernia

As listed by the trial registrant

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

Congenital diaphragmatic hernia

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    12 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Cairo University Hospital

    RECRUITING

    Cairo, Egypt

  • Children's Hospital of Omaha/ University of Nebraska

    RECRUITING

    Omaha, Nebraska, 68114, United States

  • Children's Hospital of Pittsburgh/ University of Pittsburgh

    RECRUITING

    Pittsburgh, Pennsylvania, 15213, United States

  • Cincinnati Children's Hospital and Medical Center/ University of Cincinnati

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Medical College of Wisconsin

    COMPLETED

    Milwaukee, Wisconsin, 53226, United States

  • Monroe Carrell Jr Children's Hospital at Vanderbilt

    COMPLETED

    Nashville, Tennessee, 37232, United States

  • Morgan Stanley Children's Hospital of New York- Presbyterian (Columbia University Medical Center)

    RECRUITING

    New York, New York, 10032, United States

  • New York University, Hassenfeld Children's Hospital at NYU Langone Health

    RECRUITING

    New York, New York, 10016, United States

  • Northwell Health

    RECRUITING

    Manhasset, New York, 11030, United States

  • Oregon Health & Science University, Doernbecher Children's Hospital

    RECRUITING

    Portland, Oregon, 97239, United States

  • Rush Hospital

    RECRUITING

    Chicago, Illinois, 60612, United States

  • UT Southwestern Medical Center, Children's Health, Dallas

    RECRUITING

    Dallas, Texas, 75235, United States

  • University of Michigan/ CS Mott Children's Hospital

    RECRUITING

    Ann Arbor, Michigan, 48167-5245, United States

  • Washington University Medical Center/ St. Louis Children's Hospital

    RECRUITING

    St Louis, Missouri, 63110, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.