The challenges of the european anorectal malformations-net registry
European Journal of Pediatric Surgery , Volume 25 - Issue 6 p. 481- 487
Anorectal malformations (ARM) have a low prevalence, patients need specialized surgical care, and in many cases, patients born with ARM even need life-long aftercare. Due to its low prevalence most patients are still treated in low-volume pediatric surgical centers without any adequate monitoring of the outcome. Data on prevalence, comparison of different surgical techniques, and prospective outcome measurements are still scarce and difficult to interpret. In 2010, a consortium was founded (ARM-Net consortium) including several European pediatric surgical centers to collaborate more in research and share knowledge on ARM. One of the structures started by the consortium was an ARM-Net registry for the inclusion of all future patients treated in these centers. With this review, we report the structure of the ARM-Net registry, some of the results, and discuss the challenges we faced and still face after its introduction in 2010.
|Anorectal malformation, Network, Rare diseases, Registry|
|European Journal of Pediatric Surgery|
|Organisation||Department of Pediatric Surgery|
Jenetzky, E, van Rooij, I, Aminoff, D, Schwarzer, S, Reutter, H, Schmiedeke, E, … de Blaauw, I. (2015). The challenges of the european anorectal malformations-net registry. European Journal of Pediatric Surgery (Vol. 25, pp. 481–487). doi:10.1055/s-0035-1569149