• Chronic Kidney Disease is a public health crisis affecting 850 million people worldwide and 37 million people in the United States.
• A project from Providence kidney disease experts and UCLA is helping address this crisis by advancing kidney disease research around the globe.
• Today, the CURE-CKD registry is one of the largest kidney disease resources of its kind, helping researchers understand how CKD develops, progresses, and is treated. 

For more than a decade, Providence and UCLA researchers have partnered on an ambitious effort to create a comprehensive, real-world picture of chronic kidney disease (CKD) across millions of health system patients. The result: CURE-CKD, one of the largest kidney disease research resources of its kind.  

Today, this innovative registry is helping researchers around the globe better understand how CKD develops, progresses, and is treated. 

Read more about the history behind this innovative project below. Or visit the UCLA CURE-CKD website.

The vision behind CURE-CKD

The CURE-CKD registry began 11 years ago as a concept from Providence nephrology leaders, including kidney disease experts Dr. Katherine Tuttle and Dr. Radica Alicic, who sought to use real-world health data to improve outcomes for patients living with kidney disease. 

In partnership with UCLA, they’ve since grown that vision into a powerful research platform with information from approximately 8 million unique patients.

The Registry draws from electronic health records across Providence’s footprint and includes patients with CKD as well as those at risk because of conditions such as diabetes, prediabetes, and hypertension. Researchers gather a range of information, including demographics, social history, clinical characteristics and health care utilization, creating a rich resource for understanding kidney health and disease at the population level.

Driving global scientific discovery

The registry has supported significant contributions to CKD research, including studies published in leading journals such as:

• JAMA Network Open
• The New England Journal of Medicine
• The Lancet Regional Health – Americas
• Clinical Journal of the American Society of Nephrology

Research projects have described the prevalence and severity of CKD in people with type 1 diabetes, risks of CKD among individuals with prediabetes, and other populations often underrepresented in research. They have also demonstrated the enormous competing risks of kidney failure and death in the diabetes population—major adverse events that are now modifiable by highly effective kidney- and life-saving therapies advanced by research from the CURE-CKD team.

The registry has also sparked global collaboration. Providence investigators now work with partners in England, Australia, Canada, the Netherlands, Denmark and across the United States to answer complex questions about kidney diseases and related conditions. Collaborations with global partners focus on a growing portfolio of studies, including:

• Better characterizing pediatric IgA nephropathy populations
• Understanding the burden of multimorbidity among adults living with type 1 diabetes
• Examining Alzheimer's disease and related dementias in people with diabetes and CKD

The researchers are also studying the growing number of therapies used to treat CKD, as well as treatment patterns and clinical outcomes in real-world patient populations.

Shaping CKD care and kidney health

As Dr. Tuttle explains, CURE-CKD’s impacts on patient care are highly significant. CKD has become a public health crisis affecting 850 million people worldwide and 37 million people in the United States. Kidney function often declines silently before symptoms appear. By helping researchers better understand disease trajectories and patterns, identify risk factors earlier and evaluate how therapies perform in real-world settings, the CURE-CKD Registry informs strategies for diagnosis and treatments that can save kidneys and lives.

Looking ahead, the team behind the registry will use CURE-CKD data for clinical trial emulation, an emerging approach that leverages large, real-world datasets to simulate clinical trial research and evaluate patient outcomes over time. While these approaches do not replace traditional clinical trials, they can establish benefits and assess safety in real-world populations, which is essential to understanding actual clinical effectiveness. Clinical trial emulations can also accelerate discovery, identify promising treatment strategies or answer questions that are otherwise difficult or costly to study through traditional clinical trials.

For Dr. Tuttle, Dr. Alicic, and other Providence and UCLA researchers who have spent years building and refining the registry, the project represents a long-term commitment to transforming the paradigm of CKD to kidney health through evidence, innovation and collaboration that brings hope to the many millions of people living with kidney diseases.

“As the CURE-CKD registry continues to grow, we will continue to shape new discoveries and inform current and future treatments that can save the lives of millions of people at risk for or living with kidney diseases,” said Dr. Tuttle. “Seeing our 11-year-old idea evolve into a resource that's driving true clinical impact is tremendously rewarding, and I look forward to continuing this vital work.”

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