title: The Challenges of the European Anorectal Malformations-Net Registry.
abstract: Anorectal malformations (ARM) have a low prevalence, patients need specialized surgical care, and in many cases, patients born with ARM even need life-long aftercare. Due to its low prevalence most patients are still treated in low-volume pediatric surgical centers without any adequate monitoring of the outcome. Data on prevalence, comparison of different surgical techniques, and prospective outcome measurements are still scarce and difficult to interpret. In 2010, a consortium was founded (ARM-Net consortium) including several European pediatric surgical centers to collaborate more in research and share knowledge on ARM. One of the structures started by the consortium was an ARM-Net registry for the inclusion of all future patients treated in these centers. With this review, we report the structure of the ARM-Net registry, some of the results, and discuss the challenges we faced and still face after its introduction in 2010.
authors.affiliation: Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Heidelberg, Germany.
authors.forename: Ekkehart
authors.initials: E
authors.lastname: Jenetzky
authors.affiliation: Department for Health Evidence, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Iris A L M
authors.initials: IA
authors.lastname: van Rooij
authors.affiliation: Associazione Italiana per le Malormazioni Anorettali-AIMAR, Rome, Italy.
authors.forename: Dalia
authors.initials: D
authors.lastname: Aminoff
authors.affiliation: Self-Help Organisation for People with Anorectal Malformation-SoMA e.V., Munich, Germany.
authors.forename: Nicole
authors.initials: N
authors.lastname: Schwarzer
authors.affiliation: Department of Neonatology, Children's Hospital, University of Bonn, Bonn, Germany.
authors.forename: Heiko
authors.initials: H
authors.lastname: Reutter
authors.affiliation: Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany.
authors.forename: Eberhard
authors.initials: E
authors.lastname: Schmiedeke
authors.affiliation: Department of Pediatric Surgery, Ospedale Ca' Foncello, Treviso, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Midrio
authors.affiliation: Department of Pediatric Surgery, Radboudumc-Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Ivo
authors.initials: I
authors.lastname: de Blaauw
mesh_terms: D001003:Anal Canal / Q000002:abnormalities* / Q000601:surgery; D000071056:Anorectal Malformations; D001006:Anus, Imperforate / Q000175:diagnosis / Q000601:surgery*; D005060:Europe; D006801:Humans; D012007:Rectum / Q000002:abnormalities* / Q000601:surgery; D012042:Registries