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Kidney Week

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Abstract: INFO10-TH

ADPKD Registry: A Patient-Centered Research Tool

Session Information

  • Informational Posters - I
    November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidneys

  • No subcategory defined


  • Holliday, Vanessa, PKD Foundation, Kansas City, Missouri, United States
  • Hoover, Elise, PKD Foundation, Kansas City, Missouri, United States

Autosomal dominant polycystic kidney disease (ADPKD) is the most common, hereditary kidney disease and it does not discriminate based on gender, race, or ethnicity. ADPKD causes continuous growth of kidney cysts that lead to tissue damage and fibrosis, an increase in total kidney volume, and a decrease in glomerular filtration rate. Additional effects Are common and can take decades to manifest.
In 2019, the PKD Foundation established the web-based ADPKD Registry ( to create a path for ADPKD patient enrollment in clinical trials and to encourage the use of quality of life related and patient-centered outcomes in trial design. (Hoover et al., 2022) The ADPKD Registry currently has over 2,800 participants from across the United States with patient-reported data modules centered around disease status, diagnosis, family history, impact on quality of life, diet and lifestyle, and more. The Registry utilized data relevant to clinical trial inclusion/exclusion criteria to understand study-specific eligibility and recruited for 11 clinical studies and 7 interventional trials by 2022, sending over 9,000 email notifications of possible trial opportunities in the process.
An overarching goal of the Registry is to better understand the impact that ADPKD has on quality of life. In the 2022 ADPKD Registry Annual Impact Report, patient-reported data highlights how kidney pain impacts quality of life through the application of the ADPKD-IS and ADPKD-PDS tools. Over half of participants reported (53%) being at least “Somewhat bothered” and needed to modify their lifestyle because of pain and discomfort thought to be from their ADPKD.
In July 2022, participants were asked to participate in patient-mediated electronic health record data donation. This allowed for a more representative sample of the ADPKD community to participate, as the health records available aren’t limited to only those at large, academic medical centers, but can be accessed through most online provider portals.
Future directions for the program include efforts to enroll a representative sample of ADPKD patients in the United States, and encourage use of Registry datasets Additionally, investigators involved in clinical studies are encouraged to utilize this resource to spread awareness of their research to potentially-eligible individuals.