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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What to Expect from the ARPKD EL-PFDD Meeting On August 29, 2023 the PKD Foundation will hold its first ever Externally Led Patient-focused Drug Development (EL-PFDD) Meeting on Autosomal Recessive PKD (ARPKD) and Congenital Hepatic Fibrosis (CHF). Should you attend the meeting? What should you...
The PKDF Research team is excited to expand the features available in the ADPKD Registry in summer 2023. This project has been carefully planned and executed with our patients at the center. The last few years have been spent building the largest ADPKD patient-reported outcomes dataset.
Registry Annual Impact Report Webinar The ADPKD Registry is the first nationwide, patient-reported database for ADPKD, and so far over 2,700 people have signed up! This report highlights WHERE and HOW the ADPKD Registry data has been used since its inception in 2019, gives a sneak peek at the...
