Together, we can PAVE the way to a brighter future for youth and families living with JIA!
What is the PAVE Research Project?
PAVE stands for Producing an Arthritis Value-Framework with Economic Evidence. It’s a groundbreaking research project involving six countries: Canada, Germany, Switzerland, Spain, Israel, and Belgium.
The project answers a global call by the World Economic Forum to share data across countries to study rare diseases. PAVE will be one of the first patient-centered frameworks to model the lived socioeconomic burden of living with Juvenile Idiopathic Arthritis (JIA) and propose solutions that can benefit patients worldwide.
Our goal? The Canadian PAVE team wants to better understand the challenges of living with JIA and create a clear guide (a “value framework”) that shows how JIA affects families financially and socially. This guide will help improve care, reduce costs for families, and inspire changes in healthcare and policies.
Wait… What’s a “Value-Framework”? A value-framework is like a guidebook that explains things like what families affected by JIA need most, how much JIA costs families and society, and what can be done to make things better. This will give doctors, researchers, and policymakers a better understanding of how to help patients and families.
Why Is This Important?
Living with JIA often brings additional challenges to patients and families, like:
- Out-of-pocket expenses for treatments, therapies, and other supports.
- Parents missing work to care for their child or take them to appointments.
- Patients missing or struggling to keep up with school or work.
By listening to families and sharing their stories, the PAVE team hopes to find better ways to support those living with JIA and bring their voices into healthcare decisions.
How Cassie + Friends is Making a Difference
One of Cassie + Friends’ main goals is to make sure patients and families living with JIA have a leading voice in research. That’s why we’re proud to be a key partner in the PAVE project, working directly with the research team to ensure your experiences and needs are at the heart of this work.
Here’s how we’re involved:
- Amplifying your voice: We’re making sure the challenges faced by kids, teens, and families living with JIA are front and center in the research.
- Connecting communities: We’re helping to recruit patients and families to participate in the study so that your experiences, stories, and ideas can make a real impact.
- Sharing results: When the research is complete, we’ll help translate the findings into easy-to-understand tools and resources for families and healthcare providers.
Meet our Patient and Parent Partners!
Meet some of the incredible patients and parents sharing their experiences with the PAVE team to help build the value-framework.
Our Patient Partners
Alejandra’s journey with Polyarticular JIA began when she was a few months short of her second birthday. As someone who is just about to make the leap from pediatric to adult care, she knows firsthand how daunting this experience feels. She is excited to participate in patient research as it will help gather the knowledge and resources to improve the experiences of youth and families affected by rheumatic diseases.
John first experienced joint pain when he was 9 years old but was initially misdiagnosed with Osgood-Schlatter disease. It wasn’t until he was 14 years old that he was diagnosed with very active enthesitis-related JIA and IBD, at which point he had lost most of his mobility to muscle atrophy. Early on in his arthritis journey, while learning to adapt to his diagnoses and working on regaining his mobility, John decided that he would no longer let his chronic pain define his limits and has since committed to living a life full of exploration and embracing challenges. John is passionate about patient advocacy in the context of health equity and hopes to continue sharing his lived experiences from an intersectional perspective to bring visibility to others who have fallen through the cracks of the healthcare system.
Kayla was diagnosed with arthritis when she was in university, but her symptoms first began when she was in middle school. Growing up in a small town with limited resources, Kayla and her family often had to travel to larger cities to attend appointments. These trips often required an overnight stay in a hotel, which caused Kayla to miss school, and her mom to take time off work. In university, Kayla studied Psychology and took many supplemental classes in disability studies, healthcare ethics, and sociology. Since graduation, Kayla has continued to advocate for causes close to her heart through work and volunteer experiences. Kayla is eager to be part of the PAVE project as she knows first-hand that many individuals with JIA and their caregivers face substantial barriers to accessing care. She hopes that one day, the financial and social costs of JIA won’t have to be at the forefront of families minds.
Kira was diagnosed with an autoinflammatory disease similar to Still’s disease when she was 17 after two years of symptoms and two admissions to the intensive care unit. Being from Yellowknife, NWT, Kira has firsthand experience with the challenges that come with living remotely with a rheumatic disease. She is excited to get to learn more about the similarities and differences in experiences with arthritis.
Lauren McClinton is a patient researcher with a passion for peer support and community. Diagnosed at the age of 3, she has navigated childhood with rheumatic disease and is now well-acquainted with the challenges of transitioning from pediatric to adult rheumatology care. Despite those challenges, a JIA diagnosis has never stopped Lauren from doing the things she loves, like seeing the world or connecting with the people around her. Lifelong arthritis has shaped many parts of Lauren’s life – including her interest in patient partnership in research. She feels strongly that access to the proper support can change the course of one’s disease, and gives youth with arthritis the power to live fuller, healthier, and happier lives.
Morgan has lived with arthritis since the age of eight and became connected with the Juvenile Idiopathic Arthritis (JIA) community in 2019 through Cassie and Friends. This involvement led to an opportunity to join the University of Calgary’s Patient Engaged Research program (PaCER), where she and a group of peers with JIA conducted a research project on the transition from pediatric to adult care for young people with the condition. This experience was transformative, sparking her passion for research and influencing her career path after completing her undergraduate degree.
Morgan has always been drawn to a holistic approach to healthcare, recognizing that a childhood arthritis diagnosis affects more than just physical symptoms. She is eager to contribute to the PAVE project, where she seeks to support this research on understanding the broader impacts childhood arthritis has on young people and their families.
Natasha Trehan is a university student pursuing Translational and Molecular Medicine at the University of Ottawa. She founded the Take a Pain Check podcast in March 2021, which inspired her to establish the Take a Pain Check Foundation in October 2021. Take a Pain Check hosts podcasts, runs ambassador programs, and pilots events to empower and support young individuals with rheumatic diseases globally. Natasha is a trained patient researcher from the University of Calgary through the PaCER program. She is also actively involved in research and contributes to several advisory boards including Pain Canada, Choice Research Lab, and Arthritis Research Canada. Natasha has conducted research as a Research Student at renowned institutions such as the University Health Network and the Hospital for SickKids. She is also a co-investigator on the Youth Engagement in Research Project and a part of the European Alliance of Associations for Rheumatology. She is committed to making a positive impact in the field of healthcare.
Our Parent Partners
Erik has worked in the field of public education for over 25 years and is currently serving Regina Public Schools as Supervisor of Assessment. More than anything, he enjoys spending time with his two children, Alejandra and Erikson.
Erik is grateful for the opportunity to contribute to an important project that aims to raise awareness about childhood arthritis and deepen the understanding of its effects on patients and their families! He hopes that his 20 years of lived experience being dad to a child diagnosed with JIA will help him to contribute to the project group’s success.
My name is Janna Hart and I am a mother of 4 who works as a counsellor in a high school classroom. I call Calgary home, although I am out of the city and in the mountains whenever possible, usually with my family and our two dogs. In my free time, I volunteer doing pet visitation therapy through PALS.
As an educator, I am absolutely delighted to be a part of the PAVE project. When my daughter, Laila, was just six years old, she was diagnosed with Juvenile Idiopathic Arthritis (JIA). Living in a rural area meant that we didn’t have access to the necessary supports for her condition, leading us to relocate to a larger center where she could receive the care she needed. Navigating the resources and understanding what to advocate for was a significant learning journey for us. With this personal experience, I am enthusiastic about contributing to this research and helping to create compassionate systems change.
My name is Lisa, and I live in Sherwood Park, AB. My family includes my husband, our 9-year-old son Emmett, and our 12-year-old daughter Kylie, who has brought me to this project. Kylie was diagnosed with JIA at the age of 5 and soon after with Uveitis. She currently takes weekly injections and we work closely with her healthcare team to ensure she can enjoy an active lifestyle through sports and Girl Guides. My background is in the field of medical lab and x-ray, and I now work as an educator in post-secondary facilitating interprofessional education for health students. I am excited about the opportunity to contribute to this research in creating meaningful resources and better support for JIA patients and their families.
Trish discovered the amazing JA community through Cassie + Friends after her daughter Morgan was diagnosed with JA at age 8. Trish is an officer on the board of Cassie + Friends and the founder of Upwordly Content, a marketing agency that helps brands and nonprofits on a mission tell the right stories so they can grow their impact. She enjoys relaxing as much as she loves being active. She lives in Toronto with her husband and their two adult children.
I am a municipal councillor who is also a project lead to implement large scale change projects. Being a part of this research I am hoping to help with sharing our story to make the system more supportive for JIA patients and families. My daughter was 6 when she was diagnosed with JIA and it was an emotional rollercoaster with lots of learning. Her strength through this struggle has been my guiding light.
Our Stories
Hear from patients and caregivers about their experiences with JIA and their hopes for the PAVE research outcomes.
Our Findings
Read some of the latest research findings from the PAVE project.
Uncovering the hidden socioeconomic impact of juvenile idiopathic arthritis and paving the way for other rare childhood diseases: an international, cross-disciplinary, patient-centered approach (PAVE Consortium). Pediatric Rheumatology, 09 August 2024.
Want to Learn More?
If you have any questions or want to learn more about the PAVE project, please contact Brittany Gerber at PAVE@ucalgary.ca.
This study has been approved by the University of Calgary Conjoint Health Research Ethics Board (Ethics ID: REB22-0675)
