New patient registry launches on PKD Awareness Day

The PKD Foundation has launched a new patient registry as part of Polycystic Kidney Disease Awareness Day, held on Sept. 4.

Autosomal dominant polycystic kidney disease (ADPKD) is the most common form of PKD, which causes multiple cysts that form in the kidneys. Parents with PKD have a 50% chance of passing the disease to their children, according to the PKD Foundation. ADPKD is the fourth leading cause of kidney failure.

In a blog, the foundation said the ADPKD registry is the first secure, nationwide network for patients to provide data on their condition. The registry uses an online portal to collect data, allowing 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,” the foundation said.

The aim of the registry is also to connect patients to other research studies taking place 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,” the foundation said.

Nicole Harr, director of community engagement for the foundation and a patient with PKD, said the registry will have value connecting patients with each other.

“I was diagnosed with PKD 17 years ago,” she wrote in the blog. “Before my diagnosis, I never gave much thought to clinical trials, research and patient registries ... After my diagnosis, I searched for hope and found it in research.”

Other resources for kidney patients and professionals include the PKDnetwork.org, supported by Otsuka Pharmaceutical Development & Commercialization Inc. and Otsuka America Pharmaceutical Inc. The network is a source for physicians specializing in PKD and other chronic kidney diseases (including ADPKD) and contains educational events and resources for professionals, as well as a PKD disease progression simulator to help doctors understand the rate of disease progression for ADPKD and to enhance dialogues between doctors and their patients

Otsuka has also launched pkdinfo.com, a patient-focused website with information about ADPKD, including how to manage the disease, how to seek help from physicians, and professional resources for patients and caregivers. –by Mark E. Neumann

Re ference s:

https://pkdcure.org/blog/the-adpkd-registry-has-launched/

www.pkdinfo.com/

www.PKDnetwork.org