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Rare birth defect survivors: what is life really like?

NCT ID NCT07432672

Knowledge-focused Sponsor: Medical University of Vienna 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
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 looked at the quality of daily life in children aged 5 to 18 who were born with a congenital diaphragmatic hernia (a hole in the diaphragm). Researchers asked the children, their parents, and siblings to fill out a questionnaire about physical and emotional well-being, friendships, and school. The goal was to understand how these children feel day-to-day, so doctors can better support them long-term. No new treatment was tested.

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

80 people

The number who actually took part.

Started

May 2023

Finished

Jul 2025

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

General Hospital of Vienna

Ages

5 to 18 years

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: * In this study, patients diagnosed with CDH, born between 2005 and 2019 and treated at the Medical University of Vienna at the Comprehensive Center for Pediatrics were included after giving their written consent for this study. Children with CDH, at least eight years old, their parents, and siblings (eight years or older) were asked to complete the questionnaire. * CDH patients answered the KIDSCREEN-27 childrens version questionnaire (see Appendix) if they were aged eight to 18 years. * Parents answered the KIDSCREEN-27 parents version questionnaire (see Appendix). If the CDH patients were younger than eight years, only their parents were asked to fill out the questionnaire. * If siblings were at least eight years old, they were also asked to complete a questionnaire, which is a newly created version of the KIDSCREEN-27 parents version concerning the quality of life of their CDH affected siblings (see Appendix). Exclusion Criteria: * Missing written informed consent to the study from the CDH patient, parents, or siblings led to exclusion. Parents and siblings of deceased patients were not included.

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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

Contacts and locations

Locations

  • Medical University of Vienna

    Vienna, State of Vienna, 1090, Austria

More trials for these conditions

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