A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network.

Lesley A Inker,Silvia Ferrè, Mary Baliker, Anne Barr,Lisa Bonebrake,Alexander R Chang,Juhi Chaudhari,Kerry Cooper,Clarissa J Diamantidis,Derek Forfang,Barbara Gillespie, Petros Gregoriou, Femida Gwadry-Sridhar,Keren Ladin, Cari Maxwell, Kristi R Mitchell, Kathleen P Murphy, Muhammad Rakibuz-Zaman,Michael V Rocco, Leslie A Spry,Amit Sharma,Navdeep Tangri,Curtis Warfield,Kerry Willis

American journal of kidney diseases : the official journal of the National Kidney Foundation（2023）

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摘要

The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.

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关键词

Chronic kidney disease (CKD),dialysis,electronic health records (EHRs),kidney transplant,patient activation,patient outreach,patient registry,patient-reported experience measures (PREMs),patient-reported outcome measures (PROMs),real-world data,stakeholder engagement

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