Aim 1: It is difficult to perform adequate clinical trials in pediatric diseases such as systemic lupus erythematosus (SLE) is a major challenge. To improve strategies necessary for identifying patients for trial recruitment electronic health record (EHR) algorithms were developed and tested to identify children with SLE both with and without lupus nephritis (LN). In this aim, the study team will develop computable phenotypes comprised of diagnosis, medication, procedure, and utilization codes to identify EHR-based algorithms SLE, and LN algorithms that demonstrate excellent classification accuracy across pediatric institutions.
Aim 2: Child-onset systemic lupus erythematosus (SLE) is associated with higher rates of kidney involvement, increased cumulative tissue damage, and higher mortality than adult-onset disease, yet there is a paucity of data on the comparative effectiveness of immunomodulatory therapies for the treatment of lupus nephritis. Despite treatment, only slightly more than half of children with lupus nephritis with proliferative glomerular lesions achieve a renal remission, leaving them at high risk for developing end-stage kidney disease.
Aim 3: Hypertension is a common and treatable problem that often happens with systemic lupus erythematosus (SLE) increasing future cardiovascular risk. Limited studies suggest that management of hypertension is suboptimal. This study aims to assess the potential of a multi-institutional pediatric learning health system for comparative effectiveness research in children with SLE, by characterizing angiotensin-converting enzyme (ACE) inhibitor utilization in children with SLE and lupus nephritis (LN) and the feasibility of ascertaining key treatment indications and outcomes.