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 has many disease-specific research and stakeholder committees. Click here for a complete list.
Click on a tile below to learn more about the research being done in each disease. The Rare Disease 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].
These patients and families chose to help researchers take on childhood disease. Learn more about why they work with CARRA; these interviews were conducted at the 2019 Annual Scientific Meeting in Louisville, Kentucky.