The Pediatric Colorectal and Pelvic Learning Consortium (PCPLC): rationale, infrastructure, and initial steps
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Each year, in the USA, approximately 800 babies are born with anorectal malformations (ARM) and roughly the same number with Hirschsprung disease (HD) [1, 2]. Surgical reconstruction and the associated care are important factors in the health of these patients and their quality of life. Despite successful surgical repair, more than 60% of HD and ARM patients will suffer from bowel disorders such as severe constipation and fecal incontinence [3, 4, 5, 6, 7, 8], which have detrimental long-term effects on quality of life .
Two specific areas in which research is needed are long-term outcomes and disease-specific standardized definitions. The effect of various surgical and medical treatment methods on long-term postoperative outcomes for ARMs and HD is not well understood. In addition, there are no standard definitions for medical treatment failure, appropriate preoperative evaluation, and indications for surgery in cases of functional constipation .
This work was supported in part by Primary Children’s Foundation.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
The data coordinating center and each participating clinical center obtained approvals for participation in the registry through their local institutional review boards.
A waiver of consent was granted because the registry is an observational study with minimal risk and because the scientific validity of the study may be compromised if certain subject groups were not represented.