OBJECTIVES: Immunoglobulin A nephropathy (IgAN) is the most common primary glomerulonephritis worldwide. Characterization of IgAN diagnoses, comorbidities, and disease management in real-world clinical practice is limited. This study aims to describe demographics, clinical characteristics, and disease management across the PicnicHealth IgAN patient cohort.

METHODS: IgAN patient recruitment began in August 2022 and is ongoing. Participants consent to have PicnicHealth collect their medical records, both retrospectively and prospectively, from all care-sites and providers in US health facilities. Clinical data are abstracted from structured and unstructured portions of records using human-in-the-loop machine learning. Included patients had a confirmed IgAN diagnosis in their medical records and at least one nephrology visit.

RESULTS: As of December 2023, 165 IgAN patients met inclusion criteria. Median (Q1-Q3) age at diagnosis was 37 (29-48) years old; 56% female, 74% White, and 8.5% Asian. The most common comorbidity and IgAN variant was chronic kidney disease (71%) and acute kidney injury (25%), respectively, and 17% of patients received dialysis. Patients had a median 8 (3-20) providers in total and 2 (0.9-3.7) nephrology visits per year. Most common treatments were lisinopril (43%), losartan (31%), and prednisone (30%). Evidence of albumin creatinine ratio, protein creatinine ratio, and urinalysis laboratory testing was found in 89% of patients overall, 100% among Asian patients, and 90% among White patients.

CONCLUSIONS: Through leveraging RWD, this study aligns with expectations and highlights PicnicHealth's methodology in understanding IgAN's clinical landscape in the US. By offering more complete insights into demographics, clinical characteristics, and disease management, our research enables the identification of unmet needs among IgAN patients. This insight is crucial for health economics and outcomes research aimed at optimizing care delivery and resource allocation. These findings guide a focused approach to address IgAN patient needs and highlight key areas for healthcare policy and practice improvement.