Did you know that patient registries play a vital role in improving kidney disease treatment and outcomes? In this episode, we’re diving into the KidneyCARE Study—a patient registry that uses real-world data to better care for people with kidney disease.
We sat down with experts as they explained what a patient registry is and why people with kidney disease may want to join the KidneyCARE Study. In today's episode we heard from:
Kerry K. Willis PhD- Dr Willis is the Chief Scientific Officer of the National Kidney Foundation (NKF). Since joining NKF in 1998, her major focus has been on the analysis and application of clinical evidence to improve care and outcomes for people living with kidney disease. She oversees all NKF-sponsored research and professional education programs, including the Spring Clinical Meetings; population health programs that facilitate health system and practice engagement around CKD as a quality improvement target; the Kidney Disease Outcomes Quality Initiative (KDOQI) clinical practice guidelines; KDOQI quality measurement initiative; and four peer-reviewed journals devoted to chronic kidney disease. She led the development of and currently manages the Kidney CARE (Community Access to Research Equity) Study, the first national CKD patient registry to combine patient-reported data with clinical data from electronic health records.
Rachel Claudin, BS, CCLS- Rachel Claudin is the Patient-Centered Research Director at the National Kidney Foundation (NKF). Her main work for the past three years has been focused on the advancement of the KidneyCARE Study. As a person living with Lupus Nephritis, she is excited for the patient-entered data collected by the Study to increase and improve kidney care research. Previous to the NKF, Rachel worked in hospital and hospice settings advocating for patients utilizing the shared decision-making model of healthcare.
Cari Maxwell- Cari has lived with Polycystic Kidney Disease (ADPKD) since 1989, and her personal experience, along with the experiences of her father and two siblings, fuels her advocacy for advancements in PKD treatment. She participated in the Tolvaptan Reprise trial, which led to the first-ever FDA-approved treatment for ADPKD—a treatment she continues to benefit from today. As a member of the NKF Kidney Advocacy Committee, Cari is passionate about promoting patient education, early detection, and scientific progress through patient-centered clinical research. She is dedicated to ensuring that others have access to life-changing treatments and are empowered to advocate for their health through proactive care. Cari currently works in health care cost containment strategies, where she applies her expertise to enhance patient access and outcomes.
Sandy Gilbert PhD- Sandy Gilbert is the Senior Director of Patient Outcomes Research at the National Kidney Foundation (NKF), where she manages the KidneyCARE (Community Access to Research Equity)™ Study. Since joining NKF in 2024, her focus has been on developing and overseeing this pioneering national kidney disease patient registry, the first to integrate patient-reported data with clinical data from electronic health records. The goal of the Registry is to generate critical insights into disease progression, treatment outcomes, and health disparities, in support of NKF’s mission to improve kidney health and drive innovation in kidney research and healthcare. Sandy works closely with teams of researchers and health system partners to expand the study’s reach and ensure that it reflects the needs of diverse patient populations, including those from underserved communities.
Additional Resources:
KidneyCare Study Information
Contact Information:
Call: 212.889.2210 ext.134 M-F 10am-4pm CT
Email:
[email protected]
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