Doctors rely on science and research to create treatment plans for patients—and data for said research is often collected through patient registries. In September 2019, the Polycystic Kidney Disease (PKD) Foundation launched a registry for autosomal dominant polycystic kidney disease (ADPKD).*

One year later, the ADPKD registry had already reached nearly 1,800 participants and continues to focus on further growth. Discover more about the ADPKD registry, what is asked of participants, and how to enroll if you have ADPKD.

What is the importance of a registry? 

Patient registries are designed to help further improve research for people with a specific disease or condition.

In the past, successful registries have:

• Obtained data from a wider patient community
• Observed trends among patients 
• Developed interventions for treatment or prevention of a specific disease
• Determined medication effectiveness

What makes the ADPKD registry unique?

With a disease like ADPKD, patients are seen in a variety of different health settings, from medical centers to outpatient clinics. For researchers, this makes gathering data difficult, as data is traditionally collected from medical records or insurance claims. 

Unique from all other registries in the United States, the ADPKD registry is a direct-to-patient nationwide registry. This allows the registry to receive feedback directly from patients regarding their:

• Diagnosis
• Current kidney function
• Symptoms
• Quality of life outcomes such as pain and fatigue

What are participants asked to do?

As a participant, you will be asked to enroll online through the patient portal and complete modules when prompted. Once a part of the ADPKD registry, participants are asked to fill out three core modules. Within the first year of participation, you will be asked to complete three additional modules. Some modules may be repeated every three months, six months, or annually. 

Why must participants repeat modules?

Repeating modules is imperative to a longitudinal study. This allows researchers to understand how the disease progresses differently for different people. All participants should strive to remain active throughout the years. 

The more participants and data that is collected, the stronger the research and conclusions will be. Over time, this will allow researchers to see which interventions work best, especially as new diets and therapies become available. 

What are the registry’s plans for the next year?

In year two, the ADPKD registry plans to:

• Continue to grow in participants
• Ask more questions, including on kidney pain, liver cysts, and the impact of COVID-19
• Send information on clinical trials to participants who may be eligible 
• Share data with what has been learned so far

How can you make a difference and join the ADPKD registry?

Whether newly diagnosed, living with ADPKD, on dialysis, or post-transplant, all patients with ADPKD are encouraged to join the ADPKD registry and support new research initiatives and treatment developments.

*Johnston, S. (2020, Sept. 8). ADPKD Patient Registry Celebrates Anniversary. PKD Foundation. https://pkdcure.org/blog-adpkd-registry-celebrates-anniversary/