US Veterans Administration Autosomal Dominant Polycystic Kidney Disease Cohort: Demographic, Comorbidity, and Key Laboratory Data Characteristics

Background We used the largest integrated US healthcare system, the Veterans Health Administration, to establish a robust resource for demographic, longitudinal outcome, and predictive modeling studies in autosomal dominant polycystic kidney disease (ADPKD). Methods We built the ADPKD cohort by extracting the relevant electronic health record data from nationwide Veterans Health Administration database (years 1999-2020). Results We identified 12,217 patients diagnosed with ADPKD. By the end of the 20-year study period, 5342 patients with ADPKD were deceased, 1583 were alive but reached ESKD, and 4827 remained alive without ESKD. Most demographic characteristics of this ADPKD cohort resemble the total US veteran population. For example, 94% were male patients, 45% age 65 years or older, 85% non-Hispanic, and 66% white; however, 19% were Black/African Americans (versus 12% in the general veteran population; a relevant enrichment after considering age and sex distributions between races). The comorbidities overrepresented in the ADPKD cohort include hypertension (89% versus 50%), diabetes (32% versus 22%), depression (40% versus 10%), chronic obstructive pulmonary disease (30% versus 6%), and congestive heart failure (21% versus 1%). By contrast, obesity was underrepresented in veterans with ADPKD (30% versus 41%). Conclusions We established a large electronic medical record-based cohort of ADPKD veterans. Here, we provide initial analysis of its demographic, comorbidity, and key laboratory data.