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New canadian registry aims to unlock secrets of rare childhood bowel diseases

NCT ID NCT07603232

Knowledge-focused Sponsor: McGill University Health Centre/Research Institute of the McGill University Health Centre 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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study creates a long-term registry for children with Hirschsprung's disease or anorectal malformations. It collects health data and family surveys during regular clinic visits to understand outcomes and improve care. No extra tests or procedures are needed. Up to 999 children will be followed until age 18.

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 999 people

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

Started

Aug 2025

Expected to finish

Dec 2035

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

The study population consists of pediatric patients aged 0 to 17 years with a confirmed diagnosis of Hirschsprung's disease (HD) or an anorectal malformation (ARM) who are receiving care at the Colorectal Centre of Excellence (COCOE) at Montreal Children's Hospital, McGill University Health Centre, in Montreal, Quebec, Canada. Both newly diagnosed patients and those with previously established diagnoses who are returning for ongoing follow-up care are eligible for enrollment. The registry enrolls patients across the full pediatric age spectrum, from the newborn period through late adolescence, allowing for longitudinal tracking of outcomes across critical developmental stages including infancy, early childhood, school age, and the transition to adulthood. Patients are followed until they reach 18 years of age, at which point data collection stops and participants are invited to re-consent as adults if continued follow-up is desired.

Ages

Up to 18 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 * Age 0 to 17 years at time of enrollment * Documented diagnosis of Hirschsprung's disease or an anorectal malformation * Receiving care at the Montreal Children's Hospital Colorectal Centre of Excellence (COCOE) * Patient and/or parent, caregiver, or authorized representative is able to provide informed consent or assent in accordance with applicable institutional and ethical requirements Exclusion Criteria * Age 18 years or older at time of enrollment * No confirmed diagnosis of Hirschsprung's disease or anorectal malformation * Unable to provide informed consent or assent

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Conditions

The condition(s) this trial relates to.

anorectal malformation Anorectal Malformations Fecal Incontinence Hirschsprung disease

As listed by the trial registrant

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

Anorectal malformation Colo-rectal surgery Fecal incontinence Hirschprung's disease

How to take part

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

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    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

  • Muhc-Ri-Muhc

    Montreal, Quebec, Canada

More trials for these conditions

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