Caregivers and patients of children with rheumatic diseases were asked “What is one word that comes to mind when you hear the word “research”? The larger the word, the more times it was mentioned. Over 25% of parents replied with the word “hope”. This is a powerful message as to the importance of research to those dealing with these diseases on a daily basis.
Treating diseases without evidence is a combination of doctor experience and trial and error. Working with patient caregivers, CARRA does research to create an evidence base so families have the information they need to make treatment decisions for their desired outcomes.
CARRA is organized into the following committees:
Chair Dr Pam Weiss and Vice-Chair Dr Sara Ringold lead this committee in planning and conducting research in juvenile idiopathic arthritis.
Chair Dr Aimee Hersh and Vice-Chair Dr Andrea Knight lead this committee in planning and conducting research in lupus.
Chair Dr Adam Huber and Vice-Chair Dr Susan Kim lead this committee in planning and conducting research in juvenile dermatomyositis.
SVARD stands for Scleroderma, Vasculitis and Rare Diseases. Chair Dr Suzanne Li and Vice-Chair Dr Jay Mehta lead this committee in planning and conducting research in scleroderma, vasculitis, CRMO, Sjogren’s, periodic fever, Kawasaki disease and many other rare auto-inflammatory diseases.
Chair Dr Mark Connelly and Vice-Chair Dr Jennifer Weiss lead this committee in planning and conducting research in pain. Pain in children with rheumatic diseases is common so this work group has projects that assess and treat pain in all conditions.
TRTC stands for Translational Research and Technology Committee. Chair Dr Peter Nigrovic and Vice-Chair Dr Lauren Henderson lead this committee in planning and conducting research done in a lab using cells and biology.
Click on a tile below to learn more about the research being done in each disease. The SVARD tile includes many rare pediatric rheumatic disease projects. You will find Pain and TRTC projects with each respective disease.
For additional questions regarding Research, please contact our Director of Strategic Partnerships & Patient Engagement, Vincent Del Gaizo, at [email protected].