title: Towards the perfect ARM center: the European Union's criteria for centers of expertise and their implementation in the member states. A report from the ARM-Net.
abstract: BACKGROUND
  Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations with larger patient numbers are essential to reach better treatment. The European Union transacts a political process which aims to realize such centers of expertise for a multitude of rare diseases. All the centers on a specific rare disease should constitute an ERN on that disease. ARM-Net members in different countries report on first experiences with the implementation of national directives, identifying opportunities and risks of this process.
  
  
  METHODS
  Relevant details from the official European legislation were analyzed. A survey among the pediatric surgeons of the multidisciplinary ARM-Net consortium about national implementation was conducted.
  
  
  RESULTS
  European legislation calls for multidisciplinary centers treating children with rare diseases, and proposes a multitude of quality criteria. The member states are called to allocate sufficient funding and to execute robust governance and oversight, applying clear methods for evaluation. Participation of the patient organisations is mandatory. The national implementations all over Europe differ a lot in respect of extent and timeframe.
  
  
  CONCLUSIONS
  Establishing Centers of Expertise and a ERN for anorectal malformations offers great opportunities for patient care and research. Pediatric surgeons should be actively engaged in this process.
authors.affiliation: Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany, eberhard.schmiedeke@klinikum-bremen-mitte.de.
authors.forename: E
authors.initials: E
authors.lastname: Schmiedeke
authors.forename: I
authors.initials: I
authors.lastname: de Blaauw
authors.forename: M
authors.initials: M
authors.lastname: Lacher
authors.forename: S
authors.initials: S
authors.lastname: Grasshoff-Derr
authors.forename: A
authors.initials: A
authors.lastname: Garcia-Vazquez
authors.forename: S
authors.initials: S
authors.lastname: Giuliani
authors.forename: P
authors.initials: P
authors.lastname: Midrio
authors.forename: P
authors.initials: P
authors.lastname: Gamba
authors.forename: Bd
authors.initials: B
authors.lastname: Iacobelli
authors.forename: P
authors.initials: P
authors.lastname: Bagolan
authors.forename: G
authors.initials: G
authors.lastname: Brisighelli
authors.forename: E
authors.initials: E
authors.lastname: Leva
authors.forename: C
authors.initials: C
authors.lastname: Cretolle
authors.forename: S
authors.initials: S
authors.lastname: Sarnacki
authors.forename: P
authors.initials: P
authors.lastname: Broens
authors.forename: C
authors.initials: C
authors.lastname: Sloots
authors.forename: I
authors.initials: I
authors.lastname: van Rooij
authors.forename: N
authors.initials: N
authors.lastname: Schwarzer
authors.forename: D
authors.initials: D
authors.lastname: Aminoff
authors.forename: M
authors.initials: M
authors.lastname: Haanen
authors.forename: E
authors.initials: E
authors.lastname: Jenetzky
mesh_terms: D001003:Anal Canal / Q000002:abnormalities* / Q000601:surgery; D000071056:Anorectal Malformations; D001006:Anus, Imperforate / Q000601:surgery*; D005062:European Union; D006268:Health Facilities / Q000592:standards*; D006801:Humans; D011787:Quality of Health Care; D012007:Rectum / Q000002:abnormalities* / Q000601:surgery