If you are a young person living with Crohn’s disease or ulcerative colitis, or a parent/caregiver supporting one, you know that the reality is that managing a chronic health condition is complex. On any given day, you might be juggling appointments, managing symptoms, remembering medications, and finding the right tools to stay on track.
Have you ever wondered if the apps, resources, and community support you use actually make a measurable difference in your ability to manage your health? The CLARE Study (Community Learning About Results of Engagement) is on a mission to find out—and we need your voice to do it.
Personal Perspectives: Why We Care
The CLARE Study isn’t just a project run by researchers in white coats; it is driven by people who have lived the IBD experience. Fizza, the Advocacy Lead for the ICN Patient Advisory Council and a Crohn’s patient herself, knows firsthand how much the right support matters. She shares:
“As a patient dealing with Crohn’s disease, I felt like these tools helped me with my journey with IBD and may benefit others facing IBD. We think they can help—but we want to understand how much and what works best.”
For Fizza, this study is about moving from “feeling” that something works to “knowing” it works, so every patient can have the best possible care.
Chris, who supports patient and caregiver engagement with ImproveCareNow, sees the study through a different lens—the lens of a supportive family member. He recalls:
“My brother grew up with ulcerative colitis without tools like these, and now I work with families who use them. We think they can help—but we want to understand how much and what works best.”
Chris’s connection highlights why this research is so vital: it’s about comparing the “old way” of managing IBD with a new, engaged, and tech-supported approach to ensure the next generation doesn’t have to struggle the same way.
What is the CLARE Study?
The CLARE Study is specifically designed for patients ages 13–25 who are living with IBD. The study explores how engagement (using information and resources from ImproveCareNow) and self-management (tracking symptoms and taking prescribed medications) impact health outcomes.
The goal is to bridge the gap between clinical medicine and daily life. By understanding how you use IBD-specific apps and resources, researchers can improve the tools that help thousands of families navigate this disease.
Why Participate?
There are many reasons to get involved, ranging from personal growth to community impact:
- Your Experience is Expertise: You are the only person who knows what it’s like to live in your shoes. By sharing your habits and outcomes, you help define what “success” looks like for IBD treatment.
- It Fits Your Schedule: One of the best parts about the CLARE Study is its accessibility. Participation is entirely virtual, meaning you can contribute from the comfort of your home, between classes, or on your own time.
- Earn While You Learn: We know your time is valuable. Participants in the CLARE Study can earn up to $250 for their contribution to the research.
- A Sense of Purpose: As Fizza notes, using these tools helped her on her journey. By participating, you are helping to validate those tools for others, turning your personal challenges into a roadmap for someone else’s success.
How to Get Involved
Joining the study is simple. ImproveCareNow has made it easy to learn the ropes before you commit.
- Watch and Learn: Start by visiting the CLARE Study website to watch a short, informational video that breaks down exactly what is expected.
- Express Interest: If you’re ready to help, you can submit a quick interest form directly on the site.
- Explore Resources: Even if the study isn’t the right fit for you today, Fizza and Chris encourage you to check out the ImproveCareNow Resources to see what resources are available to help you manage your IBD right now.
We Are Better Together
Research is the engine of improvement, but patients and parents are the fuel. Whether you are a 16-year-old looking for better ways to manage your symptoms or a parent who wants to see their child thrive, your participation in the CLARE Study matters.
As Chris reminds us, we have tools today that didn’t exist a generation ago. Let’s work together to make sure those tools are as powerful and effective as possible.
ℹ️ Visit www.improvecarenow.org/clare_study today to take the first step!
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.