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.
– 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.
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.