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Implementation and Evaluation of a National Multidisciplinary Kidney Genetics Clinic Network Over 10 Years.

Authors :
Jayasinghe K
Biros E
Harris T
Wood A
O'Shea R
Hill L
Fowles L
Wardrop L
Shalhoub C
Hahn D
Rangan G
Kevin L
Tchan M
Snelling P
Sandow R
Sundaram M
Chaturvedi S
Trnka P
Faull R
Poplawski NK
Huntley V
Garza D
Wallis M
Jose M
Leaver A
Trainer AH
Wilkins EJ
White S
Elbaum Y
Prawer Y
Krzesinski E
Valente G
Winship I
Ryan J
Whitlam J
Nicholls K
West K
Donaldson L
Johnstone L
Lewit-Mendes M
Kerr PG
Bodek S
Chakera A
MacShane M
Mincham C
Stackpoole E
Willis F
Soraru J
Pachter N
Bennetts B
Forbes TA
Mallawaarachchi A
Quinlan C
Patel C
McCarthy H
Goranitis I
Best S
Alexander S
Stark Z
Mallett AJ
Source :
Kidney international reports [Kidney Int Rep] 2024 May 09; Vol. 9 (8), pp. 2372-2385. Date of Electronic Publication: 2024 May 09 (Print Publication: 2024).
Publication Year :
2024

Abstract

Introduction: Diagnostic genomic sequencing is the emerging standard of care in nephrology. There is a growing need to scale up the implementation of genomic diagnostics nationally to improve patient outcomes.<br />Methods: This pragmatic study provided genomic or genetic testing to patients with suspected monogenic kidney disease through a national network of kidney genetics clinics (KGCs). We sought to evaluate the experiences of implementing genomic diagnostics across Australia and associated diagnostic outcomes between 2013 and 2022.<br />Results: We successfully established and expanded a nationwide network of 20 clinics as of 2022; concurrently developing laboratory, research, and education programs to scale the clinical application of genomics in nephrology. We report on an Australian cohort of 1506 kidney patients, of whom 1322 received their test results. We assessed barriers to implementation in the nephrology context, and where possible, applied real-time solutions to improve clinical processes over 10 years.<br />Conclusion: Developing a multidisciplinary kidney genetics model across multiple health services nationally was highly successful. This model supported optimal care of individuals with monogenic kidney disease in an economically responsible way. It has continued to evolve with technological and service developments and is now set to scale further as genomic testing for kidney patients transitions to health care system funding.<br /> (© 2024 International Society of Nephrology. Published by Elsevier Inc.)

Details

Language :
English
ISSN :
2468-0249
Volume :
9
Issue :
8
Database :
MEDLINE
Journal :
Kidney international reports
Publication Type :
Academic Journal
Accession number :
39156154
Full Text :
https://doi.org/10.1016/j.ekir.2024.04.068