Barry I Freedman1, Wylie Burke2, Jasmin Divers3, Lucy Eberhard4, Crystal A Gadegbeku5, Rasheed Gbadegesin6, Michael E Hall7, Tiffany Jones-Smith8, Richard Knight9, Jeffrey B Kopp10, Csaba P Kovesdy11, Keith C Norris12, Opeyemi A Olabisi13, Glenda V Roberts14, John R Sedor15,16, Erika Blacksher2. 1. Department of Internal Medicine, Section on Nephrology, Wake Forest School of Medicine, Winston-Salem, North Carolina bfreedma@wakehealth.edu. 2. Department of Bioethics and Humanities, University of Washington, Seattle, Washington. 3. Division of Health Services Research, Department of Foundations of Medicine, New York University Long Island School of Medicine and Winthrop Research Institute, Mineola, New York. 4. PharmaGenesis London, London, United Kingdom. 5. Department of Medicine, Lewis Katz School of Medicine, Temple University, Philadelphia, Pennsylvania. 6. Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina. 7. Department of Medicine, University of Mississippi Medical Center, Jackson, Mississippi. 8. Texas Kidney Foundation, San Antonio, Texas. 9. American Association of Kidney Patients, Tampa, Florida. 10. Kidney Disease Section, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, Maryland. 11. Division of Nephrology, University of Tennessee Health Science Center, Memphis, Tennessee. 12. Division of General Internal Medicine and Health Services Research, University of California Los Angeles Medical Center, University of California, Los Angeles, California. 13. Department of Medicine, Duke Molecular Physiology Institute, Durham, North Carolina. 14. Kidney Research Institute/Center for Dialysis Innovation, University of Washington, Seattle, Washington. 15. Department of Nephrology and Hypertension, Glickman Urology and Kidney Institute, Cleveland Clinic, Cleveland, Ohio. 16. Department of Immunology and Inflammation, Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio.
Abstract
BACKGROUND: APOL1 variants contribute to the markedly higher incidence of ESKD in Blacks compared with Whites. Genetic testing for these variants in patients with African ancestry who have nephropathy is uncommon, and no specific treatment or management protocol for APOL1-associated nephropathy currently exists. METHODS: A multidisciplinary, racially diverse group of 14 experts and patient advocates participated in a Delphi consensus process to establish practical guidance for clinicians caring for patients who may have APOL1-associated nephropathy. Consensus group members took part in three anonymous voting rounds to develop consensus statements relating to the following: (1) counseling, genotyping, and diagnosis; (2) disease awareness and education; and (3) a vision for management of APOL1-associated nephropathy in a future when treatment is available. A systematic literature search of the MEDLINE and Embase databases was conducted to identify relevant evidence published from January 1, 2009 to July 14, 2020. RESULTS: The consensus group agreed on 55 consensus statements covering such topics as demographic and clinical factors that suggest a patient has APOL1-associated nephropathy, as well as key considerations for counseling, testing, and diagnosis in current clinical practice. They achieved consensus on the need to increase awareness among key stakeholders of racial health disparities in kidney disease and of APOL1-associated nephropathy and on features of a successful education program to raise awareness among the patient community. The group also highlighted the unmet need for a specific treatment and agreed on best practice for management of these patients should a treatment become available. CONCLUSIONS: A multidisciplinary group of experts and patient advocates defined consensus-based guidance on the care of patients who may have APOL1-associated nephropathy.
BACKGROUND: APOL1 variants contribute to the markedly higher incidence of ESKD in Blacks compared with Whites. Genetic testing for these variants in patients with African ancestry who have nephropathy is uncommon, and no specific treatment or management protocol for APOL1-associated nephropathy currently exists. METHODS: A multidisciplinary, racially diverse group of 14 experts and patient advocates participated in a Delphi consensus process to establish practical guidance for clinicians caring for patients who may have APOL1-associated nephropathy. Consensus group members took part in three anonymous voting rounds to develop consensus statements relating to the following: (1) counseling, genotyping, and diagnosis; (2) disease awareness and education; and (3) a vision for management of APOL1-associated nephropathy in a future when treatment is available. A systematic literature search of the MEDLINE and Embase databases was conducted to identify relevant evidence published from January 1, 2009 to July 14, 2020. RESULTS: The consensus group agreed on 55 consensus statements covering such topics as demographic and clinical factors that suggest a patient has APOL1-associated nephropathy, as well as key considerations for counseling, testing, and diagnosis in current clinical practice. They achieved consensus on the need to increase awareness among key stakeholders of racial health disparities in kidney disease and of APOL1-associated nephropathy and on features of a successful education program to raise awareness among the patient community. The group also highlighted the unmet need for a specific treatment and agreed on best practice for management of these patients should a treatment become available. CONCLUSIONS: A multidisciplinary group of experts and patient advocates defined consensus-based guidance on the care of patients who may have APOL1-associated nephropathy.
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