National Kidney Foundation Building First-Ever Patient Registry for Chronic Kidney Disease

By ASN Staff

Announced this week, the NKF Patient Network “will create an interactive community of chronic kidney disease (CKD) patients that link patient-entered data on their health history, outcomes and preferences with clinical and laboratory data obtained from electronic health records. This unique combination of data collected will enable individualized educational resources, research, clinical care and health policy decisions to be centered on the patient.”

Said Kerry Willis, PhD, Chief Scientific Officer, National Kidney Foundation, “[t]here is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records and this pivotal combination will provide us with a 360-degree view of the patient we are working to help.”

Included in the data collected by the registry are demographics, medical history, diet, lifestyle, kidney disease stage and information about related comorbidities (such as health disease, hypertension, diabetes), laboratory values for diagnostic tests, and medication.

“The specific goals of the NKF Patient Network are to provide patient education and support, individualized to patients’ stage of disease and related health conditions; provide a large, diverse pool of patients for clinical trial recruitment, input on patient-centered trial designs and opportunities for post-trial surveillance; and to create a robust database of patient outcomes, perceptions, priorities and activities that will facilitate research, clinical care and policy decisions to improve patients’ experience and outcomes.”

The completed launch of the network, “which will include large-scale patient recruitment, is scheduled for February 2020. A global launch of the network is scheduled for 2021. Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG.”

For more information please see the National Kidney Foundation website.

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Announced this week, the NKF Patient Network “will create an interactive community of chronic kidney disease (CKD) patients that link patient-entered data on their health history, outcomes and preferences with clinical and laboratory data obtained from electronic health records. This unique combination of data collected will enable individualized educational resources, research, clinical care and health policy decisions to be centered on the patient.”

Said Kerry Willis, PhD, Chief Scientific Officer, National Kidney Foundation, “[t]here is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records and this pivotal combination will provide us with a 360-degree view of the patient we are working to help.”

Included in the data collected by the registry are demographics, medical history, diet, lifestyle, kidney disease stage and information about related comorbidities (such as health disease, hypertension, diabetes), laboratory values for diagnostic tests, and medication.

“The specific goals of the NKF Patient Network are to provide patient education and support, individualized to patients’ stage of disease and related health conditions; provide a large, diverse pool of patients for clinical trial recruitment, input on patient-centered trial designs and opportunities for post-trial surveillance; and to create a robust database of patient outcomes, perceptions, priorities and activities that will facilitate research, clinical care and policy decisions to improve patients’ experience and outcomes.”

The completed launch of the network, “which will include large-scale patient recruitment, is scheduled for February 2020. A global launch of the network is scheduled for 2021. Foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG.”

For more information please see the National Kidney Foundation website.

Date:
Friday, May 24, 2019