title: First results of a European multi-center registry of patients with anorectal malformations.
abstract: BACKGROUND
  The European consortium on anorectal malformations (ARM-NET) was established to improve the health care of patients and to identify genetic and environmental risk factors. The aim of the present study was to present the first results on clinical data of a large European cohort of ARM patients based on our registry.
  
  
  METHODS
  In 2010, the registry was established including patient characteristics and data on diagnosis, surgical therapy, and outcome regarding complications. Patients born between 2007 and 2012 were retrospectively added. A descriptive analysis of this cohort was performed.
  
  
  RESULTS
  Two hundred and three ARM patients were included. Syndromes or chromosomal abnormalities were present in 9%. Perineal fistulas were seen most in boys (42%) and girls (29%). Rare forms of ARM were found in 4% of the male and in 14% of the female patients. Forty-five percent of the patients had additional urogenital abnormalities. However, 32% of the patients were never screened for bladder abnormalities. Eight percent were never screened for renal malformations. In the majority of patients (79%), a PSARP was performed for the definitive reconstruction.
  
  
  CONCLUSIONS
  This collaborative effort provides a representative basis to estimate incidence of ARM types, to discuss differences and similarities in treatment, and health consequences throughout Europe.
authors: Department of Pediatric Surgery, Radboud University Nijmegen Medical Centre (RUNMC), Nijmegen, The Netherlands; Department of Pediatric Surgery, Sophia Children's Hospital-Erasmus MC, Rotterdam, The Netherlands. Electronic address: i.deblaauw@chir.umcn.nl.
authors: Ivo
authors: I
authors: de Blaauw
authors: Charlotte H W
authors: CH
authors: Wijers
authors: Eberhard
authors: E
authors: Schmiedeke
authors: Stefan
authors: S
authors: Holland-Cunz
authors: Piergiorgio
authors: P
authors: Gamba
authors: Carlo L M
authors: CL
authors: Marcelis
authors: Heiko
authors: H
authors: Reutter
authors: Dalia
authors: D
authors: Aminoff
authors: Muriel
authors: M
authors: Schipper
authors: Nicole
authors: N
authors: Schwarzer
authors: Sabine
authors: S
authors: Grasshoff-Derr
authors: Paola
authors: P
authors: Midrio
authors: Ekkehart
authors: E
authors: Jenetzky
authors: Iris A L M
authors: IA
authors: van Rooij
mesh_terms: D000015:Abnormalities, Multiple / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery; D000071056:Anorectal Malformations; D001006:Anus, Imperforate / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery; D002869:Chromosome Aberrations; D015897:Comorbidity; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D015994:Incidence; D007231:Infant, Newborn; D008297:Male; D011183:Postoperative Complications; D012042:Registries; D012189:Retrospective Studies; D013577:Syndrome; D016896:Treatment Outcome; D014564:Urogenital Abnormalities / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery
keywords: Anorectal malformations; Associated anomalies; Environmental risk factors; Etiology