Kids, teens, young adults and their families from across the country are landing in Minneapolis for the second of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference offers a variety of events and informational program tracks focused on education and connecting with others, including two research sessions that will take place on Friday, August 2.
This 9 AM session will cover important updates in Arthritis Foundation and CARRA JA research activities. We will then shift to a fireside chat between a researcher and parent/patient partner to talk about the many ways patients and families can—and should—engage in research. Attendees will be able to ask questions and find ways that they can get involved in research, today! Dr. Emily Von Scheven and Patient Partner Deb Constien will share their experiences with patient engagement in research.
Research Breakout: Getting in at the ground level: Patient Engagement in action!
In this session 2 PM breakout session, attendees will participate in a large-group exercise reviewing the two recently released Clinical Practice Guidelines for juvenile idiopathic arthritis (JIA) management. Patients and their families will share ideas and insights about how these guidelines may be most beneficial and accessible for patients and families to use as they navigate their disease management. This session will be led by Suz Schrandt, our patient engagement director.
The guidelines were co-developed by the Arthritis Foundation and the American College of Rheumatology (ACR). The guidelines that this session will focus on provide therapeutic approaches for 3 forms of JIA (non-systemic polyarthritis, sacroilitis and enthesitis).
Clinical practice guidelines are developed through a lengthy multi-stakeholder process that includes reviewing all the most current research and developing a proposed outline of treatment options. The recommendations are written as either “strong” recommendations or “conditional” recommendations, depending on the amount and strength of the evidence. Clinical practice guidelines can be a useful tool to clinicians as they partner with families affected by JIA, but keep in mind each child is unique and therefore treatment must often be customized for each individual depending on their unique disease characteristics and treatment preferences. Read more about the .
The guideline process included significant input from patients and parents, which was made possible through the Arthritis Foundation and ACR partnership. The research results obtained through the JAC conferences will continue this important work. “We are proud to have been involved in this work and to witness the important contributions of the patient and parent partners,” said Ms. Schrandt. “Their lived experiences truly helped to guide the project.”
Patients getting involved with research makes a difference. If you are unable to attend either of the JAC research session and would like to find out about ways you can get involved, check out some of the current opportunities available.