Download PDF
Eur J Pediatr Surg 2017; 27(05): 388-394
DOI: 10.1055/s-0037-1607057
Review Article
Georg Thieme Verlag KG Stuttgart · New York

European Reference Networks: Share, Care, and Cure—Future or Dream?

Rene Wijnen
1   Department of Pediatric Surgery, Erasmus MC Sophia, Rotterdam, The Netherlands
,
Stefan Michał Anzelewicz
2   Department of Surgery and Urology for Children and Adolescents, Medical University of Gdansk, Pomerania, Poland
,
Claus Petersen
3   Department of Pediatric Surgery, Medical School Hannover, Hannover, Germany
,
Piotr Czauderna
2   Department of Surgery and Urology for Children and Adolescents, Medical University of Gdansk, Pomerania, Poland
› Author Affiliations
Further Information

Publication History

28 August 2017

30 August 2017

Publication Date:
04 October 2017 (online)

Also available at
    Permissions and Reprints

Abstract

European Reference Networks (ERNs) are virtual networks that involve healthcare providers across Europe. The aim of ERNs is to tackle complex or rare diseases and conditions that necessitate highly specialized treatment, knowledge and resources.

This article summarizes the concept of European Reference Networks in the European Union, legislation and policy behind ERNs from the standpoint of pediatric surgical specialty. There are seven ERNs in which pediatric surgeons are involved, four of which are being discussed, namely ERN PaedCan, eUROGEN ERN, ERN RARE-LIVER and ERNICA. ERNs program is a step towards improving health care quality, reducing access inequalities, and increasing overall medical experience and knowledge but its final impact is yet to be determined.

Keywords

rare diseases - children - networking
 

  • References

  • 1 Official Journal of the European Union. Consolidated versions of the Treaty on European Union and the Treaty on the Functioning of the European Union. Off J Eur Union 2012; 0001-0390
    PubMedSearch in Google Scholar
  • 2 Commission of the European Communities. Communication from the Commission to the European Parliament, The Council, The European Economic and Social Committee and the Committee of the regions on Rare Diseases: Europe's challenges. Off J Eur Union 2008; 679
    PubMedSearch in Google Scholar
  • 3 Council of the European Union. Directive 2011/24/EU. Off. J. Eur. Union [Internet]. 2011 ; 45–65. Available at: http://data.europa.eu/eli/dir/2011/24/oj . Accessed July 31, 2017
    PubMedSearch in Google Scholar
  • 4 The European Parliament and of the Council. Commission Delegated Decision 2014/286/EU. I. 2014
    PubMedSearch in Google Scholar
  • 5 European Parliament, Council of the European Union. Commission Implementing Decision (EU) No 2014/132. Off J Eur Union 2014; ; OJ L 71; 20-23
    PubMedSearch in Google Scholar
  • 6 European Commission. Public Health. https://ec.europa.eu/health/ern/implementation/call_en
    PubMed
  • 7 European Commission Directorate-General for Health and Food Safety. Rare Disease European Reference Networks: Addendum to Eucerd recommendations of January 2013: The decision of the Commission expert group on rare diseases. Off J Eur Union 2013/c 219/04: 4-7
    PubMed
  • 8 Taruscio D, Gentile AE, Evangelista T, Frazzica RG, Bushby K, Montserrat AM. Centres of Expertise and European Reference Networks: key issues in the field of rare diseases. The EUCERD Recommendations. Blood Transfus 2014; 12 (Suppl. 03) 621-625
    PubMedSearch in Google Scholar
  • 9 Wilson C. Patient Network and Advocacy Groups. Orphan drugs: Understanding the rare disease market and its dynamics. Elsevier Ltd; 2013: 101-125
    Search in Google Scholar
  • 10 Anzelewicz S, Garnier H, Rangaswami A, Czauderna P. Cultural, geographical and ethical questions when looking to enroll pediatric patients in rare disease clinical trials. Expert Opin Orphan Drugs 2017; 5 (08) 613-621
    CrossrefPubMedSearch in Google Scholar
  • 11 Pritchard-Jones K, Dixon-Woods M, Naafs-Wilstra M, Valsecchi MG. Improving recruitment to clinical trials for cancer in childhood. Lancet Oncol 2008; 9 (04) 392-399
    CrossrefPubMedSearch in Google Scholar
  • 12 Pritchard-Jones K. ; SIOP Europe. Clinical trials for children with cancer in Europe - still a long way from harmonisation: a report from SIOP Europe. Eur J Cancer 2008; 44 (15) 2106-2111
    CrossrefPubMedSearch in Google Scholar
  • 13 Gatta G, Capocaccia R, Trama A, Martínez-García C. ; RARECARE Working Group. The burden of rare cancers in Europe. Adv Exp Med Biol 2010; 686: 285-303
    PubMedSearch in Google Scholar
  • 14 Blay JY, Coindre JM, Ducimetière F, Ray-Coquard I. The value of research collaborations and consortia in rare cancers. Lancet Oncol 2016; 17 (02) e62-e69
    CrossrefPubMedSearch in Google Scholar