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Abstract: PO1663

Burden of Alport Syndrome in the United States: A Retrospective Observational Cohort Study Using Optum Humedica Data

Session Information

Category: Genetic Diseases of the Kidneys

  • 1002 Genetic Diseases of the Kidneys: Non-Cystic

Authors

  • Wilson, Amanda, Sanofi Genzyme, Cambridge, Massachusetts, United States
  • Hariri, Ali, Sanofi Genzyme, Cambridge, Massachusetts, United States
  • Dasmahapatra, Pronabesh, Sanofi Genzyme, Cambridge, Massachusetts, United States
Background

To understand patient characteristics, treatment patterns and natural history of patients diagnosed with Alport syndrome (AS) in the US.

Methods

The study was a retrospective, observational cohort study of electronic health records (EHRs) in the Optum Humedica database. Patients were identified from January 1, 2008 to March 31, 2018, with 1+ inpatient or 2+ outpatient encounters (at least 30 days apart) by ICD-10 code, or by ICD-9 code with at least 2 non-negative mentions of AS in the physician notes within 90 days of diagnosis. Controls were matched to cases on age, sex, and Elixhauser Comorbidity Index (excluding kidney-related comorbidities). All patients had 12 months of activity prior to the AS diagnosis.

Results

A total of 628 patients met the AS criteria; 624 were matched with 2,496 non-AS controls. Median age was 38 years (47.6% were 40 years or older) and 43% were female. At baseline, 27.4% of the AS cohort recieved ACE inhibitors and 11.7% with ARBs, as compared with 15.8% and 6.8% of the controls, respectively (p<0.0001 for both); 25 (4%) of the AS cohort and 2 (0.1%) of the matched non-AS cohort had a kidney transplant (p<0.001). Baseline eGFR was significantly lower in the AS cohort (mean [sd] 54.4 [42.5] mL/min/1,73 m2) compared with the matched non-AS cohort (mean [sd] 96.7 [ 32.8] mL/min/1,73 m2; p<0.001). Median time to ESRD was 504 days, to kidney transplant 786.5 days, and to death 807 days.

Conclusion

Alport syndrome has a significant unmet medical need due to the burden of kidney disease and short time to onset ESRD.

Funding

  • Commercial Support –