Long-Term Health Outcomes in Children Born With Hirschsprung's Disease and Anorectal Malformations at the Colorectal Centre of Excellence in Quebec

The COCOE Registry is a long-term research registry based at the Montreal Children's Hospital Colorectal Centre of Excellence (COCOE) in Montreal, Quebec. It is the first prospective registry of its kind in Canada for children with two specific colorectal conditions: Hirschsprung's disease (HD) and anorectal malformations (ARM). What are these conditions? Hirschsprung's disease is a condition present at birth in which nerve cells are missing from part of the large intestine, making it difficult or impossible to pass stool normally. Anorectal malformations are a group of birth defects that affect the way the rectum and anus are formed. Both conditions require surgery early in life and can have lasting effects on a child's health, bowel function, quality of life, and development. Children and families affected by these conditions often face ongoing medical needs, including bowel management programs, follow-up surgeries, and psychosocial support - sometimes well into adulthood. Why is this registry needed? Despite the significant lifelong impact of these conditions, Canada does not yet have a national database that tracks how children with HD and ARM are doing over time. Without this information, it is difficult to understand which treatments work best, how outcomes vary across different regions or populations, and what support families need most. This registry aims to fill that gap by building a rich, long-term dataset that can inform better care for current and future patients. What is the goal of this study? The primary goals of the COCOE Registry are to: (1) establish Canada's first prospective registry for children with HD and ARM; (2) collect detailed information on diagnoses, treatments, and clinical outcomes over time; (3) understand how these conditions affect children's well-being, quality of life, and family functioning through validated patient-reported surveys; (4) identify differences in care and outcomes across regions and populations; and (5) underst