ADPKD Registry: putting power in the patient’s hands

Published June 4, 2019

In May we announced the upcoming ADPKD Patient Registry, a collection of individuals with Autosomal Dominant Polycystic Kidney Disease (ADPKD). This month, we sat down with Elise Hoover, Director of Research at the PKD Foundation (PKDF), to learn more about why PKDF is investing in a Registry and what participants can look forward to seeing.

Q: Can you share why PKDF is creating the ADPKD Registry?

Elise: Recent trends in bio-medical research and drug development are increasingly looking for ways to focus on the patient. This includes offering more ways for patients to have a say in decisions regarding their participation in research, their health priorities, and quality of life. At PKDF, we believe the Registry offers patients an opportunity to participate in PKD research in a way that’s meaningful and attainable.


Q: Was there a catalyst behind the creation of the Registry?

Elise: We know the patient community wants to participate in their own health, as well as better ways to learn about new therapies in the research pipeline. One initial question we kept coming back to was if our Registry could be a tool to help PKD patients navigate the clinical research space. With this in mind, we created what we believe is a user friendly and comprehensive database of the PKD patient experience to help PKDF match patients to new studies.


Q: How is the PKDF ADPKD Registry different from other registries?

Elise: While there are other registries out there, many of the databases are based on a specific hypothesis, outcome or focus area. These registries do not take a patient-centric approach to data collection. In this Registry, patients can provide info about diagnosis, family history, symptoms, medication and the impacts of PKD on their quality of life.

We’ll also be able to personalize the messaging a patient receives about trials and studies. Patients will receive an alert when they are a likely match for clinical trials. This expediency benefits the patient and a study sponsor and should eliminate some of the frustration of trying to connect to a study only to be turned away when they don’t meet the eligibly criteria.


Q: How will participation in the Registry empower patients?

Elise: Patients are the “fuel” of this Registry’s engine, so to speak. Their self-reported information about kidney function, family history, symptoms and more provides us with an up-to-date representation of the current status of their disease progression. Sharing this information with researchers is incredibly powerful and allows patients to fully engage in the role they have in the development of treatments for their disease. Over time, this will become a robust collection of detailed information that will offer new insights on how PKD symptoms change as individuals age and will provide a broader view of the life of a PKD patient.

We also take the privacy of our PKD patient community very seriously. Individual names, contact information and other identifying information will be kept separate from patient data and will not be shared with researchers, health insurance companies or anyone outside of the Registry staff.


Find out more or sign up here for the ADPKD Registry!



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