Actively Recruiting
Long-term Qualitative and Quantitative Outcomes of Children With Hirschsprung's Disease and Anorectal Malformations
Led by Alder Hey Children's NHS Foundation Trust · Updated on 2024-01-30
1200
Participants Needed
1
Research Sites
17 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This research aims to evaluate the long-term outcomes of children and adults with Hirschsprung's Disease (HSCR) and anorectal malformations (ARM). These conditions affect bowel function and often require corrective surgery early in life. Due to variability in severity, surgical techniques, and limited long-term data, this study seeks to provide more comprehensive information about the effectiveness of different treatments and their impact on quality of life and function over time. Participants include infants, children, and adults treated at Alder Hey Children's Hospital with confirmed HSCR or ARM. The study follows patients who have undergone various surgical approaches, such as the Duhamel or Soave procedures for HSCR and the Posterior-Sagittal Ano-RectoPlasty (PSARP) for ARM. This observational study collects both qualitative and quantitative data to compare outcomes, including bowel and urinary function, quality of life, and sexual and obstetric health in adults. During the study, researchers will assess participants at multiple ages, from 1 year up to 30 years, using standardized outcome measures. Evaluations include bowel and urinary function scores, quality of life questionnaires, and sexual and obstetric health assessments for adults. The study aims to improve counseling and clinical decision-making by identifying differences in long-term outcomes between patient groups and surgical techniques. Participation involves regular follow-ups and data collection over several years to monitor health and wellbeing.
CONDITIONS
Brief Title
Long-term Qualitative and Quantitative Outcomes of Children With Hirschsprung's Disease and Anorectal Malformations
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children treated at Alder Hey Children's Hospital with histologically confirmed Hirschsprung's Disease since diagnosis from 1991
- Children diagnosed with anorectal malformation based on position relative to the external sphincter and size
You will not qualify if you...
- Patients without histological confirmation of Hirschsprung's Disease
- Patients whose primary treatment or majority of follow-up was outside Alder Hey Children's Hospital
- Patients with funnel anus
- Adults unable to consent for themselves
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 30 years
Participants who have undergone surgery for Hirschsprung's Disease or anorectal malformations are observed to assess long-term functional outcomes, quality of life, urinary and bowel function, mortality, and other health measures.
Visits at multiple ages including 1, 5, 10, 15, 20, and 30 years
Trial Site Locations
Total: 1 location
1
Alder Hey Children's Hospital
Liverpool, Merseyside, United Kingdom, L12 2AP
Actively Recruiting
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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