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

Launched by ALDER HEY CHILDREN'S NHS FOUNDATION TRUST · Jul 5, 2022

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the long-term health outcomes of children born with Hirschsprung's disease (HSCR) and anorectal malformations (ARM). Approximately 340 babies in the UK are diagnosed with these conditions each year, and most require surgery early in life. While many children do well after surgery, some face ongoing issues like constipation or incontinence, which can affect their social life and emotional well-being. This study aims to gather more information about how these children fare over time, using standardized methods to ensure better comparisons and insights into their long-term health.

To participate in the trial, children must have been diagnosed with Hirschsprung's disease or anorectal malformation since 1991 and treated at the involved centers. The trial is currently recruiting and welcomes children of all ages and genders. Participants will have their health monitored and will contribute to important research that can help inform parents about the possible outcomes of these conditions. This study is significant because it seeks to fill in gaps in knowledge about the effectiveness of different surgical techniques and the long-term impacts of these diseases.

Gender

ALL

Eligibility 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