Lupus Foundation of America Provides Voice for Childhood Lupus Community at CARRA Meeting
Last week several Lupus Foundation of America research team members, advocates and Board leadership joined clinicians, researchers, fellows and key opinion leaders for the 2019 CARRA Annual Meeting. CARRA, standing for Childhood Arthritis and Rheumatology Research Alliance, is an investigator-led collaborative research network of clinicians focused on pediatric rheumatic diseases, including lupus. Our team was there to offer insights into the most critical needs in childhood lupus, and provide a voice for the childhood lupus community.
During the event, we, along with lupus patients and parents, learned about current childhood research going on within CARRA and most importantly provided the patient/parent perspective during work group sessions. These sessions were topic-focused and aimed to develop specific plans to address key issues in childhood lupus. One of the work groups focused on mental health and made recommendations on how to improve mental health screening in children with lupus. Additional lupus-specific work groups focused on a variety of issues including pediatric lupus nephritis, antiphospholipid syndrome (APS) in lupus, and cutaneous lupus, as well as cross-cutting sessions on clinical trial development and transition of pediatric to adult care.
In the first lupus work group session, Karin Tse, Lupus Foundation of America Senior Research Coordinator, presented an overview of the Foundation’s dedication to childhood lupus research, support and services, and the work being done through our ongoing partnership with CARRA.
The Foundation is the first and only organization with a dedicated childhood lupus research program through the Michael Jon Barlin Pediatric Lupus Research Program. Additionally, the Foundation provides a wide variety of resources for children and teens with lupus, as well as for parents, teachers, and pediatric clinicians, available through the National Resource Center on Lupus. The Lupus Foundation of America is continuing to work with CARRA to develop a research agenda for childhood lupus that identifies areas of top priority.
Research study posters and abstracts were presented from CARRA collaborations. Notably, a poster from the Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium was on display to highlight a patient-centric model of patient and family involvement across the entire research process. PARTNERS is comprised of healthcare providers, a clinician scientist-initiated research network (CARRA), a quality-improvement learning network, and three patient-advocacy groups, including the Lupus Foundation of America. Other topics of interest included ongoing research from the CARRA Registry, lupus nephritis urinary biomarkers to predict flares, and mental health outcomes for children with lupus.
The CARRA meeting was a unique opportunity for pediatric rheumatology researchers and stakeholders to work collaboratively on research projects face-to-face while networking with colleagues from around the world. From the lupus perspective, one of the most valuable aspects of the meeting was seeing parents and young adults with lupus in attendance to provide their perspective during work group sessions. The patient voice is critical in helping ensure research is addressing the most important issues to the patient.
The Lupus Foundation of America will continue to prioritize childhood lupus research and keep you updated on news and advancements in the field on Inside Lupus Research.