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Could childhood surgery for hirschsprung disease affect bladder and sexual health years later?

NCT ID NCT07742436

Knowledge-focused Sponsor: University Hospital, Grenoble Source: ClinicalTrials.gov ↗

What the study statuses mean

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Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Aug 03, 2026 · Last updated Aug 04, 2026 · Updated 1 time

Summary

This study looks at the long-term urinary, sexual, and bowel health of people aged 7 to 25 who had surgery for Hirschsprung disease as young children. Hirschsprung disease is a rare birth defect where part of the large intestine lacks nerve cells, causing blockages. Surgery removes the affected bowel segment, but the operation happens near nerves important for bladder and sexual function. Researchers want to see if about 10% of patients experience lasting urinary symptoms, and whether the type of surgery (Swenson, Duhamel, or Soave) makes a difference. Participants will fill out online questionnaires about urinary symptoms, sexual function, quality of life, and bowel function—no extra visits or exams are needed.

What this could mean

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

Active substance
Pull-through procedure (Swenson, Duhamel, or Soave) performed as part of routine care
What this could lead to
If this study succeeds, it could lead to better long-term follow-up care for people who had Hirschsprung disease surgery, helping to catch and manage urinary and sexual issues earlier.
What could go wrong
This is an observational study, so it won't test a new treatment. The results depend on people accurately reporting their symptoms, and the findings may not apply to everyone with Hirschsprung disease.

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 556 people

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

Expected to start

Aug 2026

An estimate. Start dates often move.

Expected to finish

Feb 2027

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

Hospital-based source population consisting of patients treated in the pediatric surgery departments of five French university hospitals (Grenoble, Lyon, Saint-Étienne, Clermont-Ferrand, and Marseille) who underwent surgery for Hirschsprung disease between 2000 and 2018. Patients received their initial surgical management at specialized centers, followed by routine postoperative hospital and community-based follow-up. Eligible participants are identified through each center's administrative databases using surgical procedure and diagnostic codes, with eligibility confirmed by review of electronic medical records.

Ages

7 to 25 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: * Biopsy-confirmed Hirschsprung disease treated surgically between 2000 and 2018, regardless of the pull-through technique used. * Surgery performed at one of the five participating university hospitals (Grenoble, Lyon, Saint-Étienne, Clermont-Ferrand, or Marseille). * Male or female participants. * Aged 7 to 25 years at the time of study inclusion. * No objection to participation obtained from the participant or, for minors, from the legal representative, in accordance with French regulations. * Affiliation with the French national health insurance system. Exclusion Criteria: * Syndromic Hirschsprung disease (e.g., Down syndrome, Waardenburg syndrome, or Multiple Endocrine Neoplasia type 2). * Total colonic aganglionosis. * Small-bowel aganglionosis. * Major congenital urogenital malformation unrelated to Hirschsprung disease (e.g., bladder exstrophy or posterior urethral valves). * Deceased before study inclusion. * Unable to be contacted despite repeated attempts. * Individuals not eligible for biomedical research under Articles L1121-5 to L1121-8 of the French Public Health Code.

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Conditions

The condition(s) this trial relates to.

Hirschsprung disease Lower Urinary Tract Symptoms physiological sexual disorder

As listed by the trial registrant

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

Hirschsprung disease

How to take part

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

  1. The places running it

    5 sites. 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

  • APHM

    Marseille, France

  • Chu Clermont Ferrand

    Clermont-Ferrand, France

  • Chu Grenoble Alpes

    Grenoble, 38000, France

  • Chu Saint Etienne

    Saint-Etienne, France

  • Hfme Lyon

    Lyon, France

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