At the 2019 annual meeting of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), leaders from the Lupus Foundation of America (LFA) joined other experts in offering insights into critical needs in childhood lupus.
Held in Louisville, Ky. in April, the event focused on the latest advances in childhood disease research, and offered patient and caregiver perspectives during work group sessions aimed at developing plans for addressing field challenges.
The meeting was attended by pediatric rheumatology scientists and stakeholders — including several LFA research team members, board leadership, and advocates — as well as young patients and their parents.
One work group focused on mental health, and recommended ways to improve screenings in very young lupus patients, according to an LFA news webpage. Other groups examined issues including pediatric lupus nephritis, antiphospholipid syndrome (APS) in lupus, cutaneous lupus, clinical trial development, and transitioning from pediatric to adult care.
In another session, Karin Tse, LFA senior research coordinator, discussed the foundation’s commitment to childhood lupus research, support, and services, and its partnership with CARRA. The LFA said it will continue to collaborate with CARRA to craft a priority-driven research agenda for childhood lupus.
A displayed research study poster from the Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) consortium, which includes the LFA, highlighted a patient-centric model of patient and family involvement in research processes.
“The patient voice is critical in helping ensure research is addressing the most important issues to the patient,” the LFA said in a statement.
Other presentations included updates on ongoing data reporting from the CARRA Registry, which collects clinical and patient-reported information about people with pediatric-onset rheumatic diseases; lupus nephritis urinary biomarkers to predict flares; and mental health outcomes for children with lupus.
Founded in 1977, the LFA works to accelerate lupus research and improve the lives of people living with the disease. It estimates that 1.5 million U.S. residents, and some 5 million people worldwide, have a form of lupus, a disease that strikes mostly women of childbearing age.
Between 10% and 20% of lupus patients are diagnosed as children or teens. In children, lupus tends to be relatively more aggressive and severe, with two of every three young patients developing kidney disease. The annual cost in the U.S. of treating those patients is more than $350 million.
The LFA established the childhood lupus research entity, The Michael Jon Barlin Pediatric Lupus Research Program, in 2006. The initiative supports discoveries in childhood lupus investigations for lupus kidney disease, neuropsychiatric lupus, health-related quality of life, and development of treatments. To date, the program has funded 15 projects.
Through the National Resource Center on Lupus, the foundation offers a wide array of resources for youths with lupus.