In pediatric research, patients with rare diseases, such as systemic lupus erythematosus (SLE), make adequately powered clinical studies a major challenge. Leveraging PEDSnet, we are developing and evaluating the validity of electronic health record (EHR) algorithms to identify children with SLE, with and without a history of lupus nephritis (LN).
1. Pilot identification of patients with systemic lupus erythematosus (SLE) in the pediatric nephrology data resource
2. Determine feasibility of knowledge extraction from clinical data research networks to asses practice patterns for starting immunosuppressive therapy for the treatment of LN and to longitudinally characterize the clinical response to treatment
3. Determine feasibility of knowledge extraction from clinical data research networks to assess practice patterns for starting and discontinuing ras blockers in children with SLE