Biliary atresia: unity in diversity

Pediatr Surg Int. 2017 Dec;33(12):1255-1261. doi: 10.1007/s00383-017-4156-6. Epub 2017 Oct 5.

Abstract

Biliary atresia (BA) is a rare disease of unknown origin and unsatisfying outcome. Single, multicenter and national evaluations of epidemiological and outcome data on BA have been periodically published over the course of decades. However, the diversity of the registered parameters and outcome measures impede comparability and cumulative analysis of these very worthwhile studies. Taking into account the fact that BA is a good example of translational research and transition of patients from pediatric surgery and hepatology to transplant surgery and hepatology in general, the interdisciplinary community should make every effort to develop a common platform upon which further activities are conducted. Extending this topic to BA-related diseases might increase the acceptance of research studies and enhance the effectiveness of any recommendations outlined therein. The use of the Internet-based communication platform and registry on http://www.bard-online.com represents the first step in this direction, and the database should be viewed as a helpful tool that guides further activities.

Keywords: Biliary atresia; Registries; Transition care; Translational research.

Publication types

  • Review

MeSH terms

  • Biliary Atresia / epidemiology*
  • Biliary Atresia / therapy*
  • Disease Management*
  • Global Health
  • Humans
  • Infant, Newborn
  • Morbidity / trends
  • Rare Diseases*
  • Registries*
  • Transitional Care / organization & administration*