Posted by Steve Steiner on June 07, 2016
The goal of medical research is to find answers that will improve the lives of patients. ImproveCareNow is committed to ensuring the research we support is answering the questions that matter most and will have the greatest potential to impact our community. During 2015, the ImproveCareNow community identified the most important areas where we should be focusing research. Through the Patient Priorities platform, suggestions were submitted for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics.
At the Spring Community Conference, five multi-stakeholder groups met to discuss the five highest ranked research topics, which were in the areas of decision making, dual therapy, enteral nutrition, failure to achieve remission, and risk of malignancy. The result of these meetings was the development of six focused research questions:
- How do patient and parental coping skills and measures of anxiety/depression, as well as disease severity, correlate with Quality of Life (QOL)? Research Summary >>
- Do pediatric IBD patients in deep remission with dual therapy continue to require dual therapy? Research Summary >>
- Can an established tool for nutritional therapy for induction be implemented across the network? Research Summary >>
- What are the predictors of pediatric UC colectomy? Research Summary >>
- What are the predictors of inability to achieve sustained remission status for Crohn’s/Ulcerative Colitis/IC within the first two years after diagnosis? Research Summary >>
- What is the incidence of malignancy in pediatric IBD patients, and what are the factors associated with development of malignancy? Research Summary >>
The next step in answering these questions is to assemble research teams.
All ImproveCareNow community members are invited to join. Help us outsmart IBD by joining a research team:
https://www.surveymonkey.com/r/circle-join-icn-research-team
We plan to assemble research teams over the next month. We will reach out to you, if you sign up to join a research team, to inform you of meeting times for initial conference calls for further planning.