Funded Research in Childhood Lupus
We are aggressively leading the national effort to combat childhood lupus. Our strategic approach is tackling critical areas of research so children and teens with lupus can receive the best possible care and treatment. Below are some of the many projects we funded to address this urgent unmet need in lupus research.
Kidney disease often goes undetected until it’s too late, and kidney damage in children can result in a lifetime of hospital visits. Dr. Kathleen Sullivan of the Children’s Hospital of Philadelphia studied HER2, to determine whether it can anticipate flares in children with lupus. This research may lead to real-time evaluation of disease activity. Her 5-year project led to several journal publications and patents.
Effects on the brain in lupus are thought to happen through changes in the brain’s white matter and result in challenges with tasks such as problem solving or organization. When these white-matter brain changes happen in adolescence, the problem is more difficult and important to detect early and treat. Dr. Eyal Muscal of Texas Children’s Hospital studied how to better define what changes in white-matter are causing disease. His study was a first step in establishing how doctors can use brain imaging to detect lupus brain damage early.
Children with lupus often develop more severe organ involvement than adults, including childhood lupus nephritis (cLN). Optimal control of lupus nephritis is one of the most critical problems facing these children. The Childhood Arthritis and Rheumatic Disease Alliance (CARRA), developed Consensus Treatment Plans (CTPs) for cLN. The Lupus Foundation of America funding made it possible to collect data to determine not only how effective these protocols are but also which have the least side-effects.
Determining the role of hormones that differ between the sexes helps us to understand why lupus predominately affects females and why lupus is less common in children than adults. Advances in microarray technology have expanded analysis of gene expression in blood leukocytes, or white blood cells. This study improved our understanding of how puberty affects the functional state of these white blood cells, and the pathways whose function is altered as a child progresses through the orderly series or hormone production in puberty.
An innovative approach for disease management for teens with lupus
For teens with lupus, mastering disease self-management is a crucial process required to successfully transition to independent, adult care and to prevent worsening of disease severity. Dr. Lisabeth W. Scalzi, Pediatric Rheumatologist at Penn State Hershey Children’s Hospital and her team developed an 8 week Facebook-based program that combined education, disease management and interpersonal support. They enrolled adolescents with lupus in the “Facing Lupus Together” Facebook site, while control SLE subjects only had access to the weekly educational modules. They examines measures of social media before and after the intervention, and again at 6 months after the completion of the intervention to test for sustainability of the hypothesized improvements. The program, which published results in 2018, found that it was effective in increasing medication adherence and increasing feelings of empowerment, community and self-efficacy.