Despite the advent of biologic therapy and other recent advancements in our understanding of pediatric inflammatory bowel disease (IBD), rates of clinical relapse, poor quality of life, psychosocial dysfunction, hospitalization and surgery remain unacceptably high. Optimizing outcomes for children and adolescents with IBD or other chronic illnesses requires a multi-faceted research and quality improvement agenda that includes basic science, clinical efficacy, clinical effectiveness, comparative effectiveness, healt services research, and quality improvement1. However, rarely do professional societies, foundations, government agencies and patients and their families work together to establish and implement an integrated research agenda. No meeting or mechanism currently exists to accomplish this goal specifically in pediatric IBD. In order to accomplish this critical step, """"""""Discovering the Future of Pediatric IBD Care"""""""" will be held October 17th, 2012 in Salt Lake City one day prior to the annual meeting of NASPGHAN. The global aim of the symposium is to bring together stakeholders to review state of the art research and therapy in pediatric IBD, and to explore and define a combined research and quality agenda for the next 5 years that will result in improved outcomes for these patients. Invited speakers will include members of NASPGHAN (the professional organization of pediatric gastroenterologists), the Crohn's and Colitis Foundation of America (CCFA), the Food and Drug Administration (FDA) the National Institutes of Health (NIH), and patient and parent representatives. The symposium will primarily be comprised of five modules that will explore risk stratification, quality improvement (QI) and health care delivery, emerging concepts in pathogenesis, future medical therapy and research priorities for the next 5 years. Modules will typically include a """"""""State of the Art"""""""" review, lecturs on current research, recommendations for future research related to the topic of that module, and a question and answer period to maximize communication between participants and presenters. Breakout sessions will allow participants to choose either a session on funding opportunities or an interactive session where participants will be able to view newly developed patient management tools and interact with their creators. Finally, fellows and young investigators will be invited to participate in a session that will include both a panel discussion on establishing a research career followed by the opportunity to meet and interact individually with a selection of investigators. Speakers and moderators will include junior and senior IBD investigators. We anticipate approximately 150 or more attendees to participate in this unique opportunity to capitalize on the current momentum in pediatric IBD research to develop synergistic collaborations leading to improved outcomes for these patients.
Narrative Significant gains have been made in our understanding and treatment of pediatric IBD, but children with this disease still suffer poor outcomes such as relapse, hospitalization, surgery and poor quality of life. Our goal is to bring together a wide range of researchers and patients to develop a research plan for the next 5 years that will result in improved outcomes for these patients.
|Crandall, Wallace V; Baldassano, Robert; Bousvaros, Athos et al. (2014) NASPGHAN single-topic symposium: discovering the future of pediatric IBD care. J Pediatr Gastroenterol Nutr 58:130-8|