Title
Implementation and Evaluation of a National Multidisciplinary Kidney Genetics Clinic Network Over 10 Years.
Link to article in PubMed
Author(s)
Jayasinghe, Kushani
Biros, Erik
Harris, Trudie
Wood, Alasdair
O'Shea, Rosie
Hill, Lauren
Fowles, Lindsay
Wardrop, Louise
Shalhoub, Carolyn
Hahn, Deirdre
Rangan, Gopala
Kevin, Lucy
Tchan, Michel
Snelling, Paul
Sandow, Rhiannon
Chaturvedi, Swasti
Trnka, Peter
Faull, Randall
Poplawski, Nicola K
Huntley, Vanessa
Garza, Denisse
Wallis, Mathew
Jose, Matthew
Leaver, Anna
Trainer, Alison H
Wilkins, Ella J
White, Sue
Elbaum, Yoni
Prawer, Yael
Krzesinski, Emma
Valente, Giulia
Winship, Ingrid
Ryan, Jessica
Whitlam, John
Nicholls, Kathy
West, Kirsty
Donaldson, Liz
Johnstone, Lilian
Lewit-Mendes, Miranda
Kerr, Peter G
Bodek, Simon
Chakera, Aron
MacShane, Mandi
Mincham, Christine
Stackpoole, Elaine
Willis, Francis
Soraru, Jacqueline
Pachter, Nick
Bennetts, Bruce
Forbes, Thomas A
Mallawaarachchi, Amali
Quinlan, Catherine
Patel, Chirag
McCarthy, Hugh
Goranitis, Illias
Best, Stephanie
Alexander, Stephen
Stark, Zornitza
Mallett, Andrew J
Abstract
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.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.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.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.
Publication information
Kidney Int Rep . 2024 May 9;9(8):2372-2385. doi: 10.1016/j.ekir.2024.04.068. eCollection 2024 Aug.
Date Issued
2024-05-09
Type
Journal Article
Journal Title
Kidney international reports
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