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Abstract: PO1575

Design and Basic Characteristics of a National Patient Registry in ADPKD

Session Information

Category: Genetic Diseases of the Kidneys

  • 1001 Genetic Diseases of the Kidneys: Cystic


  • Hoover, Elise, PKD Foundation, Kansas City, Missouri, United States
  • Baron, David, PKD Foundation, Kansas City, Missouri, United States
  • Benson, Beverly A., PKD Foundation, Kansas City, Missouri, United States
  • Gitomer, Berenice Y., University of Colorado Denver - Anschutz Medical Campus, Aurora, Colorado, United States
  • Kleber, Klee Robert, PKD Foundation, Kansas City, Missouri, United States
  • Manelli, Amy, PKD Foundation, Kansas City, Missouri, United States
  • Mrug, Michal, The University of Alabama at Birmingham, Birmingham, Alabama, United States
  • Park, Meyeon, University of California San Francisco, San Francisco, California, United States
  • Rusconi, Chris, PKD Foundation, Kansas City, Missouri, United States
  • Seliger, Stephen L., University of Maryland Baltimore, Baltimore, Maryland, United States
  • Perrone, Ronald D., Tufts Medical Center, Boston, Massachusetts, United States
  • Watnick, Terry J., University of Maryland Baltimore, Baltimore, Maryland, United States

Most patients with autosomal dominant polycystic kidney disease (ADPKD) do not participate in clinical research. To empower ADPKD patients in the US to participate in research and to encourage the development of optimal prognostic and treatment strategies, the PKD Foundation designed a national ADPKD Registry of patient-reported data.


The ADPKD Registry is hosted on a secure, online platform (IQVIA, Participants are registered and consented through the online system and asked to complete a series of modules quarterly. The Core Questionnaire asks about diagnosis, latest kidney function lab values, current symptoms, and comorbidities. Participants are also asked about family history, diet and lifestyle, and quality of life.


The ADPKD Registry was launched on September 4, 2019. As of May 2020, 1023 ADPKD patients across the US have registered and completed the Core Questionnaire. Participants have a median age of 52 years, and are 72% female, 94% Caucasian, 4% self-identifying as Hispanic/Latino and 2.4% as African American. 76% have not reached end stage renal disease, 4% are treated with dialysis, and 21% received a renal transplant. A family history of the disease was reported in 79% of participants, 12% have had a genetic test for PKD, with a vast majority (94%) reporting diagnosis by imaging. At the time of entering the registry, 78% reported having hypertension and 62% had liver cysts (although only 28% reported a diagnosis of polycystic liver disease(PLD)).


The ADPKD Registry is a longitudinal research tool intended to capture patient-reported data with respect to ADPKD and is designed to impact research in multiple ways. All participants have consented to be contacted about future clinical trials for which they will likely qualify and a process has been established to enable researchers to submit content for new outcome modules. Thus far modules addressing extra renal complications such as PLD and vascular aneurysms have been developed. In addition, the variety of disease stages reported by participants will allow for a range of research questions related to the clinical management of ADPKD from early stage disease through dialysis outcomes and post-transplant complications.


  • Private Foundation Support