Here is the long-overdue recap of the 2019 CARRA Annual Scientific Meeting. Around 65 parents and patients joined hundreds of pediatric rheumatology care team members (researchers, clinicians, study coordinators, research nurses, social workers, etc.) to discuss current and future research.
The parent/patient sessions began with an orientation, then included the following:
- Merit Review-to help review grant applications for CARRA funding
- Poster Review-to help evaluate the quality of current research
- Engaging Families in CARRA’s work-to enhance parent/patient engagement in research
- Patient Reported Outcomes-working with the Arthritis Foundation
- CARRA’s Patient-Facing Website & Newsletters-working on content
Families also attended sessions in their respective disease categories and beyond such as JIA, Lupus, Juvenile Dermatomyositis, Scleroderma, Vasculitis, Fibromyalgia, CRMO, Sjogrens, PFAPA, Kawasaki, Uveitis, TMJ Arthritis, Mental Health, and Pain. Sessions ran from 6:45AM (yes, AM) well into each evening. I can speak for everyone in saying that it was exhausting! Parents and young adult patients worked alongside researchers to brainstorm new research questions, create best strategies for study design, and discussed dissemination and sharing of research findings with the community.
I am constantly impressed by the volume of work happening in pediatric rheumatology at all times. Click here to view a list of CARRA member publications. There are several more projects underway and some can be viewed here on the Arthritis Foundation’s new clinical trial finder. Some of the larger CARRA projects are also listed here. I am proud to be working on several of these myself, either in an Investigator role, or as a stakeholder. CARRA is also working very hard to develop a more patient-friendly website where information about research will be available.
If anyone has any questions about research that is happening now, may have already happened, or if you want to be more involved, let me know. Next year’s meeting will be in New Orleans in conjunction with the PRYSM meeting at the end of April. If you are local to New Orleans and interested in attending the meeting, please reach out.
Thank you to the Arthritis Foundation for their generous support of CARRA’s work. Without them, we would not be accomplishing all that we are today.