Peer-reviewed article
Colorectal Centre of Excellence (COCOE) Registry: A protocol for a prospective longitudinal cohort of children with Hirschsprung's disease and anorectal malformations in Canada.
Hill L, St-Louis É, Dandavino M, Korah N, Kornitzer G et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This document describes a protocol for establishing a medical registry to collect data on children with Hirschsprung's disease and anorectal malformations in Canada. The registry will follow children from ages 0-17 using standardized clinical assessments and validated quality-of-life instruments. No results or evaluation of interventions are presented, as this is a protocol document for a registry that is being established.
Key points
- The COCOE Registry is the first prospective longitudinal cohort of paediatric patients with Hirschsprung's disease and anorectal malformations in Canada
- The registry enrolls children aged 0-17 years with documented diagnoses on a continuous basis with follow-up until age 18
- Patient-reported outcomes are collected using six validated instruments covering disease-specific quality of life, continence, general well-being, family functioning, parental adjustment, and bowel management
- The registry aims to improve clinical follow-up, inform healthcare planning, support equitable transitions to adult care, and enable international research participation
Limitations
This is a protocol document describing planned data collection methods rather than presenting study results or findings. The document does not evaluate any intervention or provide evidence about treatment outcomes, so it cannot inform clinical decision-making about managing these conditions.
Abstract
Hirschsprung's disease (HD) and anorectal malformations (ARM) are congenital colorectal conditions requiring lifelong multidisciplinary care, yet no prospective, longitudinal registry exists for affected children in Canada. We describe the protocol for the COCOE Registry, the first prospective cohort of paediatric patients with HD and ARM at the Colorectal Centre of Excellence (COCOE), Montreal Children's Hospital, McGill University Health Centre, Montréal, Québec, Canada. The registry enrolls children aged 0-17 years with a documented diagnosis of HD or ARM on a continuous basis, with follow-up until age 18. Clinical data are abstracted from a standardised multidisciplinary assessment form and entered into REDCap. Patient-reported outcomes are collected using six validated instruments spanning disease-specific quality of life, continence, general well-being, family functioning, parental adjustment, and bowel management experience. Statistical analyses will include descriptive summaries, group comparisons, survival analyses, and multivariable logistic regression to identify factors associated with key outcomes, reported in accordance with STROBE guidelines. Research ethics approval has been granted by the McGill University Health Centre Research Ethics Board (MUHC REB No. 2026-10997). This study is registered with ClinicalTrials.gov (NCT07603232). The COCOE Registry will generate longitudinal data to improve clinical follow-up, inform healthcare planning, support equitable transitions to adult care, and enable participation in international multicentre research.