"I’ve had the privilege of attending four CARRA meetings now and each and every year the meeting blows me away. It’s inspiring to sit with care teams and brainstorm TOGETHER better solutions, better strategies, and better research questions to hopefully someday lead to a cure."
“What is important to you?” That is the most important question a service business can ask their customer. Doctors, nurses and research coordinators are called Health Service Providers (HSPs). They provide a service to their patients. In order to know what is important to the patient, they need to ask them. Since their founding, CARRA has recognized the importance of partnering with patient families in research. Patient families are the true North in guiding research to answer important questions in pediatric rheumatic diseases. From forming research questions to sharing research results, CARRA partners with families every step of the way.
One way CARRA collaborates with families in research is through PARTNERS.
Partners stands for Patients, Advocates, and Rheumatology Teams NEtwork for Research and Service.
PARTNERS formally links 5 organizations with a vision to improve the lives of children with rheumatic diseases through research that matters to YOU. The organizations that make up PARTNERS are:
PARTNERS trains doctors and families to work together to plan and do research. PARTNERS is also a matchmaker, connecting families with researchers to work on projects. Through PARTNERS, patient families are teaming with CARRA members to create research projects that will provide easy to understand information families and doctors need to select between different treatments.
There are many ways to help. You can answer surveys, participate in focus groups, join committees or work groups, and even be co-investigators on study teams. There are many ways to participate in research and the most important aspect is that your voice is heard!
On November 16, 2020 PARTNERS invited CARRA members, patients, caregivers, and advocacy organizations representing nearly every pediatric rheumatic disease to participate in a symposium titled “Connection, Diversity & Engagement: Navigating Virtually During COVID-19 & Beyond”. Pediatric rheumatology caregiver and symposium attendee Erin Wade recaps the event here.
Click Here for Prezi Page and Transcript
Learn more about becoming a research partner by watching these videos created by the Arthritis Foundation.
Another way CARRA partners with families is through the Annual Scientific Meeting. Each year, CARRA hosts a working meeting to plan and discuss research. The CARRA meeting is the largest annual gathering for pediatric rheumatology in North America.
Each year, parents and young adults invited to the meeting have the opportunity to:
Click Here to learn more about the CARRA Annual Scientific Meeting.
For additional Patient Engagement support, please contact our Director of Strategic Partnerships & Patient Engagement, Vincent Del Gaizo, at [email protected].
The PARTNERS Newsletter is published twice a year. Issues can be found below: