Patient-Centered Engagement Project around Chronic Kidney Disease

Delaware-CKD.org

The Academy/DPHA is partnering with the Christiana Care Value Institute to engage patients (and their support networks) who have Chronic Kidney Disease, End-stage Renal Failure, Nephrotic Syndrome, and who have had kidney transplants. More than 20 million people over the age of 20 in the U.S. have Chronic Kidney Disease (CKD). Because CKD patients have multiple comorbid conditions, they see numerous healthcare providers. Poor communication between physicians as well as different electronic health records systems can create fragmented patient care, resulting in suboptimal clinical outcomes. Development of a CKD registry in Delaware will join electronic health records of multiple sources to improve coordination of care. A team of patients, clinicians, and researchers are collaborating to gather information and facilitate Patient-Centered Outcomes Research (PCOR) based on the CKD registry.