Clinical trial Recruiting at 1 site Observational

Long-term outcomes for children with Hirschsprung's disease and anorectal malformations

Official title: Long-term Qualitative and Quantitative Outcomes of Children With Hirschsprung's Disease and Anorectal Malformations

Run by Alder Hey Children's NHS Foundation Trust · NCT05450991 · Data updated 2026-11-12

This study looks at how well children with Hirschsprung's disease and anorectal malformations are doing in the long run after their surgeries to help families understand their health and quality of life better.

More Hirschsprung Disease trials

Quick facts

Study typeObservational
SexAll
Enrollment1200 (estimated)
SponsorAlder Hey Children's NHS Foundation Trust
Academic / other
Locations1 site (Liverpool, Merseyside)
StatusRecruiting
StartedJanuary 25, 2022
Main results expectedAugust 1, 2028
Study endsDecember 1, 2028
Registry record updatedJanuary 30, 2024
Trial IDNCT05450991 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include children diagnosed with Hirschsprung's disease or anorectal malformations who have been treated at Alder Hey Children's Hospital since 1991.

Probably not a fit

Patients with non-histologically diagnosed Hirschsprung's disease or those whose treatment has primarily occurred outside the participating centers may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to assess the long-term qualitative and quantitative outcomes of children diagnosed with Hirschsprung's disease and anorectal malformations. It will involve approximately 340 children who have undergone surgical treatment since 1991, focusing on the variability in surgical techniques and their impact on health outcomes. The study seeks to address the lack of comprehensive data on the effectiveness of different management strategies and the long-term quality of life for these patients. By collecting standardized outcome measures, the research aims to provide clearer prognostic information for families.

Why it matters

Potential benefit: If successful, this study could lead to improved understanding of long-term outcomes and better management strategies for children with these conditions.

How similar studies have gone: While there have been studies on these conditions, this research aims to fill a gap in long-term outcome data, making it a novel approach.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

* All children treated at either center with histologically confirmed Hirschsprung's Disease since diagnosis from 1991
* All children diagnosed with anorectal malformation on the basis of position in relation to the external sphincter and size

Exclusion Criteria:

* Patients with non-histologically diagnosed Hirschsprung's Disease
* Patients whose initial primary treatment or majority of follow-up for either condition has been external to either center
* Patients with funnel anus
* Adults who are unable to consent for themselves

Where it's running

  • Alder Hey Children's Hospital
    Liverpool, Merseyside, United Kingdom
    Recruiting

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.