ADPKD Registry Annual Report 2021: What We’re Learning from Participants

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Thu., April 14, 2022 | 7 p.m. CDT
The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 2,300 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. Each year, we plan to produce an annual report to share with you what we’re learning from participant responses to these modules.

Learning objectives

—Describe the potential value of patient-reported data to ADPKD research.
—Summarize the impact that participation in the ADPKD Registry is making on the understanding of the disease.
—Recognize the importance PKD Foundation places on the privacy and security of the data we collect through the Registry.


Elise Hoover, MPH

Elise Hoover, MPH

Senior Director of Research | PKD Foundation

Elise is the Senior Director of Research at the PKD Foundation (PKDF). She led the design and implementation of the ADPKD Registry along with members of the clinician, researcher, and patient communities. Before joining PKDF, Elise worked as a Clinical Research Coordinator at Tufts Medical Center on PKD studies such as REPRISE (the tolvaptan clinical trial), as well as held an epidemiology fellowship at the National Cancer Institute. She’s excited to be able to contribute to patient-centered research in her position at PKDF.

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