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
- 309 Downloads
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.
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.
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.
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.
KeywordsAnorectal malformation ERN Patient organisation Multidisciplinary treatment
- 1.Moore SW (2006) Genetics, pathogenesis and epidemiology of anorectal malformations and caudal regression syndrome. In: Holschneider AM, Hutson JM (eds) Anorectal malformations in children. Springer, New York, p 31Google Scholar
- 3.Levitt MA, Peña A (2006) Complications after the treatment of anorectal malformations and Redo operations. In: Holschneider AM, Hutson JM (eds) Anorectal malformations in children. Springer, New York, p 319Google Scholar
- 8.Van der Steeg HJJ, Schmiedeke E, Bagolan P, Broens P, Demirogullari B, Garcia-Vazquez A, Grasshoff-Derr S, Lacher M, Leva E, Makedonsky I, Sloots CEJ, Schwarzer N, Aminoff D, Schipper M, Jenetzky E, van Rooij IALM, Giuliani S, Crétolle C, Holland Cunz S, Midrio P, de Blaauw I (2015) European consensus meeting of ARM-Net members concerning diagnosis and early management of newborns with anorectal malformations. Tech Coloproctol Jan 22. [Epub ahead of print]Google Scholar
- 9.Commission delegated decision of 10 March 2014, Official Journal of the European Union L147/71-78 http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=uriserv:OJ.L_.2014.147.01.0071.01.ENG
- 10.Commission implementing decision of 10 March 2014, Official Journal of the European Union L147/79-87 http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:32014D0132
- 11.Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare. Official Journal of the European Union, L 88/45-65. http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:32011L0024
- 12.http://ec.europa.eu/eurostat/tgm/table.do?tab=table&init=1&language=en&pcode=tps00001&plugin=1 (Inhabitants per country in 2014)
- 13.https://www.cia.gov/library/publications/the-world-factbook/rankorder/2054rank.html (birth rate per country in 2013)
- 14.http://www.eurocat-network.eu/prevdata/resultsPdf.aspx?title=A5&allanom=false&allregf=true&allrega=true&anomalies=44&winx=1342&winy=638 (Prevalence data of anorectal atresia/stenosis per 10,000 births. Numbers of the period 2008-2012)
- 15.Jenetzky E (2007) Prevalence estimation of anorectal malformations using German diagnosis related groups system. Pediatr Surg Int 23(12):1161–1165Google Scholar
- 16.(2014) Centres of expertise for anorectal malformations: the Italian situation. In: Aminoff D, Bucci S (ed) Lecture given at the 21st International meeting of the Pediatric colorectal club, DublinGoogle Scholar
- 17.van Kuyk EM, Wissink-Essink M, Brugman-Boezeman AT, Oerlemans HM, Nijhuis-van der Sanden MW, Severijnen RS et al (2001) Multidisciplinary behavioral treatment of defecation problems: a controlled study in children with anorectal malformations. J Pediatr Surg 36:1350–1356Google Scholar
- 18.Schmiedeke E, Busch M et al (2008) Multidisciplinary behavioural treatment of fecal incontinence and constipation after correction of anorectal malformation. World J Pediatr 4(3):206–210Google Scholar
- 20.Murphy F, Puri P, Hutson JM, Holschneider AM (2006) Incidence and frequency of different types, and classification of anorectal malformations. In: Holschneider AM, Hutson JM (eds) Anorectal malformations in children. Springer, Berlin, Heidelberg, New York, p 163Google Scholar