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Abstract: PO1317

Real-World Healthcare Utilization and Clinical Markers Preceding Dialysis in Patients with Primary Hyperoxaluria (PH) in the United States

Session Information

Category: Genetic Diseases of the Kidneys

  • 1002 Genetic Diseases of the Kidneys: Non-Cystic


  • Karafilidis, John, Dicerna Pharmaceuticals Inc, Cambridge, Massachusetts, United States
  • Fazio-Eynullayeva, Elnara, TriNetX, Cambridge, Massachusetts, United States
  • Mucha, Lisa, Dicerna Pharmaceuticals Inc, Cambridge, Massachusetts, United States
  • Landsman-Blumberg, Pamela B., TriNetX, Cambridge, Massachusetts, United States
  • Kuranz, Seth P., TriNetX, Cambridge, Massachusetts, United States

PH is the accumulation of oxalate resulting in urolithiasis, nephrocalcinosis, chronic kidney disease (CKD), and eventually end-stage renal disease (ESRD) that usually requires dialysis. This study examined demographics, clinical characteristics, and healthcare utilization (HCU) among dialysis-treated PH patients during the time leading up to dialysis start.


This was a retrospective study of PH patients (ICD-10: E72.53) initiating dialysis (study entry), on or after October 1, 2018, in TriNetX Dataworks USA, a federated EMR network of 60+ million de-identified patients from 44 healthcare organizations (HCOs). Patient age, sex, race, comorbidities, CKD stage, kidney stone events (KSE), and HCU were examined at least 6 months prior to dialysis, through up to 5 years.


The final study cohort included 47 patients: mean age of 59 years, 53% female, and 85% white. Only 47% had a recorded diagnosis of PH prior to dialysis, and 55% had a diagnosis of ESRD. During the 6 months immediately preceding dialysis, 91% of patients had ≥1 outpatient office visit, 17% ≥1 ED visit, and 53% ≥1 inpatient stay. HCU for the full study period showed 98% of patients had > 1 physician office visit, 51% >1 ED visit, and 70% >1 inpatient stay (Figure 1). Patients with recorded KSE (n= 19; 40%) had a mean of 4 events during the study period. The frequency of KSEs doubled from 1 to 2 per person per year as patients neared dialysis. In the 6 months prior to dialysis, 70% of patients had CKD of stage III or higher recorded in their EMR.


In this real-world study, more than one-half of patients with PH were undiagnosed prior to initiating dialysis, according to the data reviewed. In addition, high rates of costly HCU, including ED visits and inpatient stays, were observed during the same timeframe. The number of KSEs increased over the study period, which may be indicative of worsening renal function due to PH prior to dialysis.


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