A Systematic Review of Reported Outcomes in ADPKD Studies

Sara S. Jdiaa, Nedaa M. Husainat, Razan Mansour, Mohamad A. Kalot, Kerri McGreal, Fouad T. Chebib, Ronald D. Perrone, Alan Yu, Reem A. Mustafa

Research output: Contribution to journalArticlepeer-review


Introduction: Autosomal dominant polycystic kidney disease (ADPKD) is a progressive genetic kidney disease. Studies of ADPKD presented results using different outcome measures. We aimed to summarize outcomes reported in ADPKD studies, including composite outcomes. Methods: We conducted a systematic review of published studies that included patients with ADPKD and measured kidney-related outcomes. We searched published databases and included all studies regardless of design with at least 100 participants for observational studies. We excluded studies that were limited to dialysis, transplant, or pregnancy outcomes in patients with ADPKD. Results: This review includes data from 175 published articles (49 randomized controlled trials, 2 interventional clinical trials, 30 post hoc analyses, and 94 observational studies). We identified 214 different outcomes, and we categorized them into the 24 main outcome domains. In addition, the review identified 13 articles that reported 9 different composite outcomes. Conclusion: The finding highlights the inconsistency in the outcomes reported by researchers and how they are measured in ADPKD studies. The variability in the outcomes reported supports the need to standardize outcomes in ADPKD studies.

Original languageEnglish (US)
Pages (from-to)1964-1979
Number of pages16
JournalKidney International Reports
Issue number9
StatePublished - Sep 2022


  • PKD
  • polycystic kidney disease

ASJC Scopus subject areas

  • Nephrology


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