Pediatric nephrologist Meredith Atkinson discusses her research on lupus kidney disease in children and the Renal Anhydramnios Fetal Therapy (RAFT) trial. Pediatric-onset lupus is associated with higher rates of lupus kidney disease, called lupus nephritis. This is a rare disease, which makes conducting clinical trials difficult. However, the research team is working with PEDSnet, a pediatric health care data learning system helping with this effort. Johns Hopkins is also leading the RAFT trial, which includes a multidisciplinary study team with neonatologists, maternal and fetal surgeons, pediatric surgeons and pediatric nephrologists.
My name is MEREDITH Atkinson. I'm an associate professor of pediatrics in the division of pediatric nephrology at Johns Hopkins. And one of our research priorities is studying lupus kidney disease in Children childhood onset lupus is associated with higher rates of lupus kidney disease called lupus nephritis and higher rates of morbidity and mortality than adults with new onset lupus, only about half of Children with lupus nephritis achieve remission with treatment, leaving them at high risk for progressive chronic kidney disease, kidney failure and associated comorbidities. One of the biggest challenges in studying lupus in Children is that it's a rare disease which makes clinical trials in particular, difficult to conduct is there are relatively few patients cared for across many national clinical care sites. We've partnered with Peds Net, which is a National Multi Center Network of pediatric Health Care Systems containing data on more than 6 million Children. The Peds Net Learning Health System enables identification and study of patient cohorts using case defining algorithms applied to the electronic health record. A rich and underutilized resource using the Peds Net Learning health system. We've developed and validated the first computational phenotype for identification of Children with lupus nephritis. Our next step happening now is to describe the initial treatment for new onset lupus nephritis in this national cohort of Children. And from there, we'll be able to conduct pragmatic clinical trials, examining various approaches to treatment and outcomes in Children with lupus kidney disease. Here at Johns Hopkins, we lead the multidisciplinary renal an hydramnios, fetal therapy or raft trial, fetal renal failure, whether from bilateral renal agenesis or from other causes results in an hydramnios which is the absence of amniotic fluid and leads to lethal pulmonary hyperplasia in the fetus. The raf trial is studying whether serial amnio infusions given in pregnancies complicated by an hydramnios can prevent lethal pulmonary hyperplasia in newborns. There are nine sites for this multi center trial across the country including Hopkins. And our multidisciplinary study team includes neonatologists, maternal and fetal surgeons, pediatric surgeons and pediatric nephrologist to explore the maternal safety and neonatal outcomes associated with this innovative treatment.
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