Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a genetic disorder affecting around 500,000 patients in the U.S. and millions worldwide. It’s the most common genetic kidney disease and the fourth leading cause of kidney failure, causing cysts to grow in the kidneys and eventually leading to kidney failure. Yet despite advancements in treatments that slow ADPKD, there is no cure for this disease today.
A team of PKD experts at Providence Swedish is committed to changing that. Led by Dr. Osama Amro, the Center for Polycystic Kidney Disease at Swedish in Washington State is one of the few U.S. centers of excellence focused on PKD. Not only do they provide comprehensive individualized care to help patients manage this complex disease, but they’re also leading some of the most exciting research aimed at advancing the management of this complex disease.
The prospect of an effective PKD treatment is at the heart of these efforts, explains Dr. Amro: “The burden of this disease on patients is unacceptable. By the end of my career, I want to make sure there’s an effective PKD treatment available for everyone.”
Currently, the PKD Center in Seattle, Washington is participating in clinical research projects for patients with ADPKD. Additionally, the Center is part of the ADPKD registry, a patient-powered research tool that supports PKD research and advocacy nationwide.
The FALCON Phase III Clinical Study
FALCON is a Phase III study of the investigational drug bardoxolone methyl, a capsule taken by mouth that has been tested in many clinical studies with different diseases. Research from prior trials for patients with chronic kidney disease, cancer, and pulmonary hypertension suggests the drug may offer benefits to PKD patients, including decreasing inflammation in the kidney.
The trial is ongoing, enrolling patients with ADPKD. Approximately 580 patients at 200 study centers will be enrolled globally. Learn more at pkdstudy.com
The ADPKD Registry
This patient-powered registry invites those with ADPKD to share their experiences and the impacts of the disease on their lives in order to support and advance PKD research. With the help of participants, researchers gain insights into the patient journey, unmet medical needs, patient preferences, and the disease’s burden on the lives of patients and families.
In addition to helping connect patients with trials, patient stories and insights from the registry inform advocacy for resources at the federal level, educational tools for patients and clinicians, and other efforts to respond to and treat PKD. To learn more or sign up for the registry, visit connect.pkdcure.org/adpkd-registry/
These are just a few examples of how Providence researchers and caregivers are making a difference and building a healthier future. To learn more, visit the links below.
- For information about the Center for Polycystic Kidney Disease at Swedish, visit: swedish.org/services/polycystic-kidney-disease
- For PKD-specific resources, education, and more, check out the PKD Foundation website at pkdcure.org/
- For more news, stories, and resources from the Providence Research Network, visit our website at research.providence.org