Over the past few years, the PKD Foundation has collaborated with PKD researchers, clinicians, patients, and advocates to design, build, and implement this project. All parties agree, a nationwide patient registry for ADPKD is valuable for all involved and is the next step in supporting PKD research and advocacy.
What is the ADPKD Registry?
The ADPKD Registry is a secure, nationwide network that uses an online portal to collect patient-provided data on living with PKD. The Registry allows researchers to study a wide variety of information from groups of patients. This collection of information will help researchers better understand the natural progression of the disease. Over time, the data in the Registry will generate new insights on how PKD symptoms change as patients age and provide a broader view of life with PKD.
Through the Registry, the Foundation wants to not only collect valuable data from patients, but also help connect patients to other research studies ongoing throughout the country. Based on the answers provided through online questionnaires, the Registry will be able to determine what research a participant may qualify for and then provide them with information about the study.
We believe in the value of research and clinical trials and know that without the patients who signed up for the Tolvaptan studies, the first FDA-approved treatment for ADPKD in 2018 would not have been possible. Today, there are more clinical trials looking for patients to sign up, and the Foundation wants to make PKD research meaningful and accessible. This Registry is the tool created to meet that need.
Why should patients join the registry?
We have asked our own Nicole Harr, Director of Community Engagement, to tell us why she plans to sign up for the ADPKD Registry: “I was diagnosed with PKD seventeen years ago. Before my diagnosis, I never gave much thought to clinical trials, research and patient registries. These words were definitely not a part of my day to day vocabulary. After my diagnosis, I searched for hope and found it in research. Learning about current PKD research and participating in clinical trials has given me hope that future generations will have treatment options and will not suffer the full effects of PKD. I am excited to sign up for the Registry and do my part to further advancements in PKD research.”
Power in numbers
Patient registries are powerful tools of disease advocacy for organizations such as the PKD Foundation. The more people who participate, the more we’ll learn about the patient journey, unmet medical needs, patient preferences and the disease burden on everyday life for patients and their families. We’ll ask patients to remain involved in the project long-term and are excited to share these results as the Registry progresses.
Who is eligible to enroll or participate?
People of all ages diagnosed with autosomal dominant polycystic kidney disease (ADPKD) are asked to join the Registry. Patients under 18 may join with the permission of a parent or legal guardian. Patients who are newly diagnosed, living with PKD, on dialysis, or post-transplant are all encouraged to participate.
Join the ADPKD Registry, share your experience and play a critical role in advancing research for patients everywhere.