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Pediatric Surgery International

, Volume 31, Issue 8, pp 741–745 | Cite as

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

  • E. SchmiedekeEmail author
  • I. de Blaauw
  • M. Lacher
  • S. Grasshoff-Derr
  • A. Garcia–Vazquez
  • S. Giuliani
  • P. Midrio
  • P. Gamba
  • BD. Iacobelli
  • P. Bagolan
  • G. Brisighelli
  • E. Leva
  • C. Cretolle
  • S. Sarnacki
  • P. Broens
  • C. Sloots
  • I. van Rooij
  • N. Schwarzer
  • D. Aminoff
  • M. Haanen
  • E. Jenetzky
Original Article

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.

Keywords

Anorectal malformation ERN Patient organisation Multidisciplinary treatment 

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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • E. Schmiedeke
    • 1
    Email author
  • I. de Blaauw
    • 2
  • M. Lacher
    • 3
  • S. Grasshoff-Derr
    • 4
  • A. Garcia–Vazquez
    • 5
  • S. Giuliani
    • 6
  • P. Midrio
    • 7
  • P. Gamba
    • 8
  • BD. Iacobelli
    • 9
  • P. Bagolan
    • 9
  • G. Brisighelli
    • 10
  • E. Leva
    • 10
  • C. Cretolle
    • 11
  • S. Sarnacki
    • 11
  • P. Broens
    • 12
  • C. Sloots
    • 13
  • I. van Rooij
    • 14
  • N. Schwarzer
    • 15
  • D. Aminoff
    • 16
  • M. Haanen
    • 17
  • E. Jenetzky
    • 15
    • 18
  1. 1.Department of Pediatric Surgery and UrologyCentre for Child and Youth Health, Klinikum Bremen-MitteBremenGermany
  2. 2.Department of Surgery-Pediatric SurgeryAmalia Children’s Hospital-RadboudumcNijmegenThe Netherlands
  3. 3.Clinic for Pediatric SurgeryHannover Medical SchoolHannoverGermany
  4. 4.Clinic for Pediatric Surgery and -UrologyFrankfurt/MainGermany
  5. 5.Pediatric Surgery DepartmentHospital 12 de OctubreMadridSpain
  6. 6.Pediatric Surgery DepartmentSt.George’s Healthcare NHS Trust and UniversityLondonUK
  7. 7.Pediatric SurgeryOspedale Ca’ FoncelloTrevisoItaly
  8. 8.Pediatric SurgeryUniversity of PaduaPadovaItaly
  9. 9.Department of Medical and Surgical NeonatologyBambino Gesù Children Hospital-Research InstituteRomeItaly
  10. 10.Department of Pediatric SurgeryFondazione IRCCS Ca’ Granda, Ospedale Maggiore PoliclinicoMilanItaly
  11. 11.Centre of Expertise for Rare Disease (MAREP), Department of Pediatric SurgeryNecker Enfants-Malades Hospital, Paris Descartes UniversityParisFrance
  12. 12.Clinic for Pediatric Surgery, Medical CentreUniversity of GroningenGroningenThe Netherlands
  13. 13.Department of Pediatric SurgeryErasmus-MC Sophia Children’s Hospital RotterdamRotterdamThe Netherlands
  14. 14.Department for Health EvidenceRadboud Institute for Health Sciences, Radboud UMCNijmegenThe Netherlands
  15. 15.Patient-Organisation SoMAMunichGermany
  16. 16.Patient-Organisation AIMARRomeItaly
  17. 17.Patient-Organisation VAMaastrichtThe Netherlands
  18. 18.Division of Clinical Epidemiology and Aging ResearchGerman Cancer Research CentreHeidelbergGermany

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