The PKD Foundation prides itself on being an accessible resource for PKD patients, families and caregivers. But we also understand the need to provide practical ways for PKD patients to play a proactive role for themselves and future generations.

The upcoming ADPKD Patient Registry will provide just that. The Registry, a collection of individuals with Autosomal Dominant Polycystic Kidney Disease (ADPKD), will allow patients ways to participate in personal health outcomes and learn about new therapies available in the research pipeline. Through the Registry, patients will answer questions about their disease experience and complete surveys designed to provide real-life data to Federal agencies.

Patient-generated topics

• Pain
• Sleep disturbance
• Fatigue
• Anxiety

Beyond information

Designed with a focus on patient-centered outcomes and patient empowerment, the ADPKD Registry is a practical way for patients to get involved while helping themselves and potentially the next generation. Those who take part in surveys will generate information that can assist Federal agencies in approving new treatments and managing the way in which different levels of pain and treatment are quantifiable, according to Andy Betts, Chief Executive Officer, PKD Foundation.

“Google can only provide information,” he said. “It is not able to help patients navigate what’s specific to their diagnosis. The Registry is a way for patients to see they are not alone in the battle against PKD. Their contribution can provide a collective voice for patients and a better tomorrow for many.”

Patient centric

Through the Registry, PKD Foundation collaborators will share the eligibility criteria as new clinical studies begin recruitment. To protect privacy, the Registry will send the patient information about the study, reasons why the individual may be qualified to participate and instructions on how to contact study staff. A Registry participant may receive information about multiple studies or not, depending on current kidney function, transplant status, age and other factors, according to Elise Hoover, Director of Research, PKD Foundation.

“The choice to participate in the study, or even contact study staff, is completely up to the patient,” she says. “Regardless, participation in the ADPKD Patient Registry is a contribution to observational research and will provide valuable, anonymous information to PKD researchers about the PKD experience.”

PKD Foundation research highlights

• Discovery of the first PKD gene
• Assistance in establishing a surrogate endpoint biomarker to measure pain and treatment levels
• Help in obtaining FDA approval for the first PDK treatment
• Ongoing support of more than 1,300 PKD researchers
• Leveraging $1.5 billion in federal funding for PDK research

Staying the course

Building up and maintaining the ADPKD Registry over the long-term will rely on the efforts of many. With continued commitment, patients will have the benefit of seeing an overview of the answers provided by the rest of the cohort and clarity of where they fit within it. Aggregated results from participant questions will provide real-time results on the dashboard of the Registry and will reflect what the patient community reports as being important to them. Those who qualify for upcoming trials will also become instrumental in helping PKD treatments make it to market quicker.

Ultimately, success depends on getting enough PKD patients enrolled in the ADPKD Registry. “The future of PKD research depends on putting patients at the center of research and that is the reason the Registry is a top priority for the Foundation and more importantly for the PKD community,” Andy concluded.

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