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A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network
Institution:1. Division of Nephrology, Tufts Medical Center, Boston, Massachusetts;2. National Kidney Foundation, New York, New York;3. Brown and Toland, Oakland, California;4. Alport Syndrome Foundation, Scottsdale, Arizona;5. Kidney Health Research Institute, Geisinger Health, Danville, Pennsylvania;6. AstraZeneca, Wilmington, Delaware;7. Divisions of General Internal Medicine and Nephrology and Department of Population Health Science, School of Medicine, Duke University, Durham, North Carolina;8. Labcorp Drug Development, Princeton, New Jersey;9. Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina, Chapel Hill, North Carolina;10. Pulse Infoframe, London, Ontario, Canada;11. Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts;12. Health Equity Outcomes Inc., Vienna, Virginia;13. Novartis Pharmaceuticals, East Hanover, New Jersey;14. Wake Forest School of Medicine, Winston-Salem, North Carolina;15. Lincoln Nephrology & Hypertension, Lincoln, Nebraska;16. Bayer Pharmaceuticals, Cambridge, Massachusetts;17. Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
Abstract:
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  • Keywords: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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