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ASN leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

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Kidney Week

Abstract: PO1257

Two Years In: The Development and Basic Characteristics of a National Patient-Powered 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
  • Benson, Beverly A., PKD Foundation, Kansas City, Missouri, United States
  • Dahl, Neera K., Yale University, New Haven, Connecticut, United States
  • Gitomer, Berenice Y., University of Colorado - Anschutz Medical Campus, Aurora, Colorado, United States
  • Manelli, Amy, PKD Foundation, Kansas City, Missouri, United States
  • Mrug, Michal, The University of Alabama at Birmingham School of Medicine, Birmingham, Alabama, United States
  • Park, Meyeon, UCSF Medical Center, 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

The therapeutic pipeline in autosomal dominant polycystic kidney disease (ADPKD) has grown, generating a need for more patient participation in clinical trials. To facilitate US ADPKD patient enrollment and to encourage the utilization of patient-reported outcomes in trial design, the PKD Foundation (PKDF) designed a national ADPKD Registry.


The ADPKD Registry is hosted on a secure, online platform (IQVIA, Participants are consented through the online system and complete a series of modules. The Core Questionnaire includes diagnosis, latest kidney function tests, and comorbidities. Family history, diet and lifestyle, quality of life, and complications of liver cysts, and vascular outcomes are queried.


Between 9/4/19 and 5/1/21, 1,580 ADPKD patients have registered and completed the Core Questionnaire. Participants have a median age of 49 years, 73% have not reached ESKD, and 79% reported a family history of the disease. Currently, the cohort is 71% female, 93% Caucasian, 4.8% Hispanic/Latino and 2.5% African American. Strategic efforts are in development to increase diversity in the cohort.

Nearly three quarters of participants had not previously participated in research, with only 27% indicating that they had been in another PKD study or clinical trial. All participants have consented to be contacted about future studies. Many will likely qualify for ongoing trials based on completed module data. Thus far, the Registry platform has made over 2,200 participants contacts regarding six clinical studies, with some individual overlap due to similar eligibility criteria.


The ADPKD Registry is a longitudinal research tool intended to capture ADPKD patient-reported data and is designed to impact research in multiple ways. It will allow for a range of research questions related to the clinical management of ADPKD from early disease through dialysis and post-transplant outcomes. Additionally, modules on health care access & utilization and COVID-19 impact will help the PKDF better understand the challenges of this community.


  • Private Foundation Support