LAUSR

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 [3–8], which have detrimental long-term effects on quality of life [7]. Two specific areas in which research is needed are longterm 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 [9]. Critical barriers to research in these areas include highly variable clinical care, a wide spectrum of poorly defined clinical phenotypes, small sample sizes, a lack of coordinated multicenter effort, incomplete data collection, inconsistent clinical definitions, and a lack of established longterm outcome measures. Current guidelines for surgical treatment, postoperative care, and clinical outcomes for these disorders are based primarily on expert opinion and retrospective studies performed at single institutions. Without common definitions and standardized outcome measures applied consistently across multiple centers, the results from these single-center studies may not be generalizable. As a result, there is no clear best practice for many aspects of care, and practice varies widely between institutions. This report describes the development, organization, and work plan of an international consortium, the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC; http://pcplc .org). The purpose of the PCPLC is to provide the infrastructure needed to conduct rigorous multicenter studies that can overcome many of the previous barriers to research.