P1.19: Top-ten research topics in paediatric chronic intestinal failure, on behalf of the European Reference Network for rare Inherited and Congenital Anomalies(ERNICA) – Intestinal Failure working group*

Abstract

Introduction:Chronic intestinal failure in children is a rare and heterogeneous disease for which high-quality evidence is lacking to guide clinicians in daily practice. The European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) has installed an intestinal failure working group with the aim to improve the care and treatment for these patients. One of the working group’s strategies is to combine the knowledge on intestinal failure in the European expertise centres united in ERNICA. Areas of research interest and plans for future studies have been discussed in January 2019 during a two-day meeting in Amsterdam, the Netherlands. Methods: Healthcare professionals from each participating centre as well as patient representatives presented a top-5 of research questions they deemed most important. The resulting top-10 research questions were discussed, after which a final consensus list of research topics was drawn up. Results: Twenty-five healthcare professionals from nine countries as well as three patient representatives presented a total of eighteen top-5 research questions. Twelve healthcare professionals were specialized in paediatric gastroenterology and nine in paediatric surgery. Furthermore, three healthcare professionals specialized in adult intestinal failure and one dietician were present. Table 1 shows the final consensus list of research topics, to which was added the need for a joint European paediatric intestinal failure patient registry. Discussion: Subgroups were formed to address these different research topics and develop a research strategy for future projects. The ultimate goal is to increase the standard of care for children with chronic intestinal failure.