Current Research Opportunities:
Examination of the perceived impact, utility, and effectiveness of a shared decision-making tool for surgery in pediatric Inflammatory Bowel Disease
The goal of this study is to understand the past experiences of patients, parents, and doctors who have used or viewed ICN’s "Should I have IBD Surgery?" shared decision-making tool (IBD Surgery Shared Decision-Making Toolkit - ImproveCareNow). The virtual patient tool was created to help families and patients identify their concerns, preferences and resources when considering IBD surgery. The tool provides doctors with suggestions on how to incorporate the tool into the patient’s plan of care. Using this tool gives patients and families the opportunity to involve their doctors and care teams in shared decision-making (SDM).
The research team hopes that this study will provide an understanding of the impact, usefulness, and effectiveness of this tool for providers and for pediatric IBD patients considering surgery.
Click here if you are a provider or advanced practice practitioner
Click here if you are a patient or parent
PI: Kelly Sandberg, MD, MSc
SHINE-2 Study
What is the SHINE-2 study?
Ulcerative colitis (often referred to as “UC”) is a chronic condition that may recur at various times over a lifetime and requires long-term medical care. UC causes inflammation in the lining of the colon (also called the “large intestine”). The main symptoms of UC are pain and recurring diarrhea (loose, watery stools with more movement of the bowel), which may contain blood and/or mucus.
Children with UC may experience emotional, physical, and social difficulties because of this condition. The effects can be experienced by the whole family. There is a need to provide more effective medical therapy for children with UC.
The SHINE-2 clinical research study (also called a “clinical trial”) is looking to see if an investigational medication works in children who are 2–17 years of age and diagnosed with UC. This study will also look at how safe the investigational medication (referred to as the “study drug”) is and how it acts in the body.
If your child takes part, they will be in the SHINE-2 study for about 1.5 years.
Learn more at the SHINE-2 Study website
Assessing Weight Stigma in Pediatric IBD Medical Providers
This study is to learn about medical providers’ perceptions of weight in pediatric IBD. Participating in the study would be completing a one-time secure online survey that we expect will take 15-20 minutes that can be completed on your own device. Participants can enter in a raffle to win one of two gift cards.
Participate in the Survey
