UnknownNot Applicable

The Association Between Calretinin and the Function of Ganglion Cells in Hirschsprung Disease

Canada50 participantsStarted 2020-05-01

Plain-language summary

This study aims to compare the outcomes of patients with long segment Hirschsprung disease or total colonic aganglionosis who had negative calretinin staining and positive ganglion cells on the proximal resection margins to those who had both positive findings.

Who can participate

Age range

0 Years – 18 Months

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Confirmed histopathological diagnosis of Hirschsprung disease from January 1, 1990 to August 31, 2019 * Long-segment Hirschsprung disease (type A and B) * Total colonic aganglionosis (TCA) * Surgery at CHUSJ * Tissue blocks of proximal resection margin available for pathological analysis * Minimum 1 month of postoperative follow-up Exclusion Criteria: * Short-segment Hirschsprung disease (conventional form, rectosigmoid junction) * Total colonic with small bowel aganglionosis (TCSA) * Surgery done at another institution * Early deaths * Lost to follow-up * No documented post-operative outcome

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Long-term outcomes (Quality of life questionnaire)

Timeframe: 1 year

Trial details

NCT IDNCT04149093

SponsorSt. Justine's Hospital

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2021-09-01

View on ClinicalTrials.gov More Hirschsprung Disease trials

Who can participate

Age range

0 Years – 18 Months

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.