LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.

The PRODUCE Study is now officially enrolling eligible participants. Four ImproveCareNow centers, including Seattle Children’s Hospital, Stanford Children's Health, Nemours Children's Health System - Wilmington, and Children’s Mercy are actively recruiting participants. The remaining seven centers should be recruiting participants by May.

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

In August funding was announced for a study examining the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in pediatric patients with Crohn’s disease and ulcerative colitis using a combination of “N of 1” methods and mHealth technology. This study has been named by the ImproveCareNow community.

Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

A team from ImproveCareNow led by Heather Kaplan, MD, MSCE and Lisa Opipari-Arrigan, PhD will take part in a $2.5 million research project in partnership with the Health eHeart Alliance, to conduct a study using an innovative combination of “N-of-1” study designs and mobile health technology. ImproveCareNow will focus on using a series of N-of-1 studies to understand the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) as compared to a liberalized SCD and unrestricted diet.