2022 Registry Annual Impact Report Webinar

Back to Search
May 23, 2023

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 updates coming to the Registry this summer, and provides an overview of Registry demographics. 

Learning Objectives:

– 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.

– Describe the new features launching in May 2023.


Franz Winklhofer, MD
Elise Hoover, MPH

Elise is the Vice President of Research Programs at 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.

Vanessa Holliday, MPH

Vanessa is a Research Strategist at PKDF. She aids in running the PKDF grants and fellowships program, along with the ADPKD Registry. Before joining PKDF in September of 2021, Vanessa was completing her Master of Public Health with The University of Missouri. She looks forward to learning from patient’s on their ADPKD journey and what that means for research in her position at PKDF.

Related Resources



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...

PRMRP funding for PKD research

PRMRP funding for PKD research

DOD's PRMRP PKD grant opportunities Join Dr. Cecilia Dupecher and the PKD Foundation on March 21 @ 12pm CST for a webinar on the DOD’s PRMRP PKD grant opportunities! This informational webinar will be aimed at PKD researchers and will review the relevant funding opportunities and tips on how to...