EICHORCondition: Anorectal Malformation · Hirschprung's Disease · Colo-rectal Surgery · Sponsor: McGill University Health Centre/Research Institute of the McGill University Health Centre
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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 patien…
This description comes directly from the study's public registry record.
No contact information is available for this study as per the public registry record.
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Inclusion Criteria * Age 0 to 17 years at time of enrollment * Documented diagnosis of Hirschsprung's disease or an anorectal malformation * Receiving care at the Montreal Children's Hospital Colorectal Centre of Excellence (COCOE) * Patient and/or parent, caregiver, or authorized representative is able to provide informed consent or assent in accordance with applicable institutional and ethical requirements Exclusion Criteria * Age 18 years or older at time of enrollment * No confirmed diagnosis of Hirschsprung's disease or anorectal malformation * Unable to provide informed consent or assent
Reproduced word-for-word from the public registry record — the study team can answer questions about it.
| Muhc-Ri-Muhc | Montreal, Quebec, Canada | — |
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Source record: clinicaltrials.gov/study/NCT07603232