Towards the perfect ARM center: the European Union’s criteria for centers of expertise and their implementation in the member states. ... View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2015-07-26

AUTHORS

E. Schmiedeke, 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

ABSTRACT

BackgroundPediatric 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.MethodsRelevant 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.ResultsEuropean 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.ConclusionsEstablishing 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. More... »

PAGES

741-745

Journal

TITLE

Pediatric Surgery International

ISSUE

8

VOLUME

31

Author Affiliations

  • Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany
  • Department of Surgery-Pediatric Surgery, Amalia Children’s Hospital-Radboudumc, Nijmegen, The Netherlands
  • Clinic for Pediatric Surgery, Hannover Medical School, Hannover, Germany
  • Clinic for Pediatric Surgery and -Urology, Bürgerhospital, Frankfurt/Main, Germany
  • Pediatric Surgery Department, Hospital 12 de Octubre, Madrid, Spain
  • Pediatric Surgery Department, St.George’s Healthcare NHS Trust and University, London, UK
  • Pediatric Surgery, Ospedale Ca’ Foncello, Treviso, Italy
  • Pediatric Surgery, University of Padua, Padova, Italy
  • Department of Medical and Surgical Neonatology, Bambino Gesù Children Hospital-Research Institute, Rome, Italy
  • Department of Pediatric Surgery, Fondazione IRCCS Ca’ Granda, Ospedale Maggiore Policlinico, Milan, Italy
  • Centre of Expertise for Rare Disease (MAREP), Department of Pediatric Surgery, Necker Enfants-Malades Hospital, Paris Descartes University, Paris, France
  • Clinic for Pediatric Surgery, Medical Centre, University of Groningen, Groningen, The Netherlands
  • Department of Pediatric Surgery, Erasmus-MC Sophia Children’s Hospital Rotterdam, Rotterdam, The Netherlands
  • Department for Health Evidence, Radboud Institute for Health Sciences, Radboud UMC, Nijmegen, The Netherlands
  • Patient-Organisation SoMA, Munich, Germany
  • Patient-Organisation AIMAR, Rome, Italy
  • Patient-Organisation VA, Maastricht, The Netherlands
  • Division of Clinical Epidemiology and Aging Research, German Cancer Research Centre, Heidelberg, Germany
  • Identifiers

    URI

    http://scigraph.springernature.com/pub.10.1007/s00383-015-3752-6

    DOI

    http://dx.doi.org/10.1007/s00383-015-3752-6

    DIMENSIONS

    https://app.dimensions.ai/details/publication/pub.1035208767

    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/26210660


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