What is it about?
It is hard to study chronic diseases in children in the same way we study them in adult patient populations. Learning Health Systems are designed to allow new methodologies for studying disease outcomes and for identifying optimal treatment strategies. It is ideally suited for studying chronic diseases, such as lupus and lupus kidney disease, in children
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Why is it important?
Lupus is a syndrome that can manifest in a million different ways and with millions of different combinations of symptoms. Therefore, identifying patients with lupus and lupus kidney disease in a Learning Health System can be a big challenge. Mis-identification in a research study is bad, just like getting the diagnosis wrong in a clinical setting is bad. Lupus patients often tell you that they had been mis-diagnosed once or many times before doctors finally figured out that they had lupus all along.
Perspectives
This is only the first step in using Learning Health Systems to study childhood-onset systemic lupus erythematosus (SLE). Now that we know how to accurately identify patients with lupus in these large databases, we can begin to answer questions that can save lives, decrease hospitalizations, and prevent kidney failure.
Dr Scott E Wenderfer
Baylor College of Medicine
Read the Original
This page is a summary of: Using a Multi-Institutional Pediatric Learning Health System to Identify Systemic Lupus Erythematosus and Lupus Nephritis, Clinical Journal of the American Society of Nephrology, November 2021, American Society of Nephrology,
DOI: 10.2215/cjn.07810621.
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