National Institutes of Health (NIH)

Living with PKD
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The agency of the U.S. government primarily responsible for biomedical and health-related research.

Related Resources

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

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

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.

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