General Info

About

The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 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 share with you what we’re learning through an Annual Report.

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Related Resources

COVID-19 Update

COVID-19 Update

Tuesday, September 21, 2021 | 7 p.m. CDT

Learn about the current recommendations surrounding COVID-19 and immunocompromised individuals.

Learning Objective(s):
—Understand the implications of the Delta variant of COVID.
—Learn precautions needed against the Delta variant of COVID.
—Discuss the current CDC recommendations regarding COVID and immunocompromised individuals

Latest discoveries in ADPKD genetics

Latest discoveries in ADPKD genetics

Tuesday, September 28, 2021 | 7 p.m. CST

What is the database and what are we learning from it?

Learning Objective(s):
—Understand how genetic test results can tell us about a PKD patient’s disease progression.
—Learn how to sign up to participate in genetic research.
—Increase knowledge of PKDF’s funded research programs and projects