EFCCA´s second Symposium on IBD Research funded by patients took place in Bucharest, Romania on 27 May 2018. The Symposium brought together over 80 representatives from patients groups from 5 continents, gastroenterologists and other healthcare providers as well as relevant stakeholders in order to reinforce patients’ role and voice in research.
It built on the first Symposium on IBD Research that was organised by EFCCA in 2012 and which gathered evidence and information from IBD patient associations that directly fund or promote research into the causes and treatment of IBD and provided a unique platform for IBD associations from around the world to exchange and get new ideas in developing research-support strategies.
This year’s Symposium in Bucharest layed the grounds for an information model that allows patient associations, individuals and/or researchers to know what subjects are being investigated, to evaluate or develop cross frontier co-operations, to create synergies and to better strategize research. The keynote speaker of the Symposium, Professor Claudio Fiocchi, set the scene for the discussions which were structured around 3 clusters. Cluster 1 looked at research projects by patient associations dealing with new challenges beyond originators and biosimilars. Cluster 2 included research projects that highlighted patients’ priorities and unmet needs on research and cluster 3 focused on patient-centered research and clinical trials. Finally, Dr. Joana Torres, Gastroenterology Department, Hospital Beatriz Ângelo, (Portugal) concluded the presenations by presenting a research entitled "A survey on the phenotypic features of IBD in couples with IBD and their offspring".
The cluster sessions were moderated by professor Gerhard Rogler, MD, PhD, Zurich University Hospital; Scientific Officer of the ECCO Governing Board, Professor Dr. Adrian Saftoiu, Member of the UEG Public Affairs Committee; University of Medicine and Pharmacy, Craiova, Romania and Professor Ron Shaoul, MD, Pediatric Gastroenterology Institute, Ruth Children's Hospital,Rambam Medical Center.
The Symposium has been a huge success starting from the inspiring keynote speech by Professor Claudio Fiocchi to the interesting research projects presented by our patient associations and the ensuing discussions amongst delegates, moderators and presenters. A big thank you to all the participants for making the event such a accomplishment.
A full report will be made available in the coming weeks. For more information please contact the EFCCA office.