Shaping the future of kidney genetics in Australia: proceedings from the KidGen policy implementation workshop 2023

Amali Mallawaarachchi; Erik Biros; Trudie Harris; Bruce Bennetts; Tiffany Boughtwood; Justine Elliott; Lindsay Fowles; Robert Gardos; Denisse Garza; Ilias Goranitis; Matilda Haas; Vanessa Huntley; Julia Jefferis; Karin Kassahn; Anna Leaver; Ben Lundie; Sebastian Lunke; Caitlin O'Connor; Greg Pratt; Catherine Quinlan; Dianne Shearman; Jacqueline Soraru; Madhivanan Sundaram; Michel Tchan; Giulia Valente; Julie White; Ella Wilkins; Steve I Alexander; Noa Amir; Stephanie Best; Hossai Gul; Kushani Jayasinghe; Hugh McCarthy; Chirag Patel; Zornitza Stark; Andrew J Mallett

doi:10.1186/s40246-024-00656-y

Shaping the future of kidney genetics in Australia: proceedings from the KidGen policy implementation workshop 2023

Hum Genomics. 2024 Aug 17;18(1):88. doi: 10.1186/s40246-024-00656-y.

Authors

Amali Mallawaarachchi^#^{1

2

3}, Erik Biros^#^{1

4

5

6}, Trudie Harris^{1

4

6}, Bruce Bennetts^{7

8}, Tiffany Boughtwood^{4

9}, Justine Elliott¹⁰, Lindsay Fowles¹¹, Robert Gardos¹², Denisse Garza¹³, Ilias Goranitis^{4

14

9}, Matilda Haas^{4

9}, Vanessa Huntley¹⁵, Julia Jefferis¹⁶, Karin Kassahn^{17

18}, Anna Leaver¹⁹, Ben Lundie^{20

21}, Sebastian Lunke¹⁰, Caitlin O'Connor²², Greg Pratt²³, Catherine Quinlan^{1

24

25

26

27}, Dianne Shearman²⁸, Jacqueline Soraru^{29

30}, Madhivanan Sundaram³¹, Michel Tchan³², Giulia Valente¹⁹, Julie White³³, Ella Wilkins^{1

4

10

24

34}, Steve I Alexander^{1

35

36}, Noa Amir^{35

37}, Stephanie Best^{4

9

38}, Hossai Gul³⁹, Kushani Jayasinghe^{1

4

40

41}, Hugh McCarthy^{1

35

36

42

43}, Chirag Patel^{1

22}, Zornitza Stark^{1

10

9

24}, Andrew J Mallett^{44

45

46

47}

Affiliations

¹ The KidGen Collaborative, Australian Genomics, Melbourne, VIC, Australia.
² Garvan Institute of Medical Research, Sydney, NSW, Australia.
³ Department of Medical Genomics, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
⁴ Murdoch Children's Research Institute, Melbourne, VIC, Australia.
⁵ College of Medicine & Dentistry, James Cook University, Townsville, QLD, Australia.
⁶ Townsville Institute of Health Research and Innovation, Townsville University Hospital, Townsville, QLD, Australia.
⁷ Department of Molecular Genetics, The Children's Hospital at Westmead, Sydney, NSW, Australia.
⁸ Specialty of Genomic Medicine, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
⁹ Australian Genomics, Melbourne, VIC, Australia.
¹⁰ Victorian Clinical Genetics Services, Melbourne, VIC, Australia.
¹¹ Pathology Queensland, Genetic Testing Stewardship Service, Brisbane, QLD, Australia.
¹² PKD Australia, Sydney, NSW, Australia.
¹³ Royal Hobart Hospital, Hobart, TAS, Australia.
¹⁴ Health Economics Unit, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
¹⁵ Royal Adelaide Hospital, Adelaide, South Australia, Australia.
¹⁶ Princess Alexandra Hospital, Brisbane, QLD, Australia.
¹⁷ Faculty of Health and Medical Sciences, The University of Adelaide, Adelaide, South Australia, Australia.
¹⁸ Genetics and Molecular Pathology, SA Pathology, Adelaide, South Australia, Australia.
¹⁹ Austin Hospital, Melbourne, VIC, Australia.
²⁰ Pathology Queensland, Brisbane, QLD, Australia.
²¹ Institute for Molecular Bioscience and Faculty of Medicine, The University of Queensland, Brisbane, QLD, Australia.
²² Genetic Health Queensland, Royal Brisbane and Women's Hospital, Brisbane, QLD, Australia.
²³ Central Queensland University, Brisbane, QLD, Australia.
²⁴ Department of Paediatrics, The University of Melbourne, Melbourne, VIC, Australia.
²⁵ Department of Nephrology, Royal Children's Hospital, Melbourne, VIC, Australia.
²⁶ Kidney Regeneration, Murdoch Children's Research Institute, Melbourne, VIC, Australia.
²⁷ Melbourne Genomics Health Alliance, Melbourne, VIC, Australia.
²⁸ Alport Foundation of Australia, Sydney, NSW, Australia.
²⁹ Department of Nephrology and Hypertension, Perth Children's Hospital, Perth, WA, Australia.
³⁰ Department of Nephrology and Renal Transplantation, Fiona Stanley Hospital, Perth, WA, Australia.
³¹ Royal Darwin Hospital, Darwin, NT, Australia.
³² Westmead Hospital, Sydney, NSW, Australia.
³³ Office of Research and Innovation, Queensland Health, Brisbane, QLD, Australia.
³⁴ Royal Children's Hospital, Melbourne, VIC, Australia.
³⁵ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, NSW, Australia.
³⁶ Department of Nephrology, Sydney Children's Hospital, Sydney, NSW, Australia.
³⁷ Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
³⁸ School of Health Sciences, The University of Melbourne, Melbourne, VIC, Australia.
³⁹ University of Technology Sydney, Sydney, NSW, Australia.
⁴⁰ Department of Nephrology, Monash Medical Centre, Melbourne, VIC, Australia.
⁴¹ School of Clinical Sciences, Monash University, Melbourne, VIC, Australia.
⁴² School of Medicine, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
⁴³ Department of Nephrology, The Children's Hospital at Westmead, Sydney, NSW, Australia.
⁴⁴ The KidGen Collaborative, Australian Genomics, Melbourne, VIC, Australia. [email protected].
⁴⁵ College of Medicine & Dentistry, James Cook University, Townsville, QLD, Australia. [email protected].
⁴⁶ Townsville Institute of Health Research and Innovation, Townsville University Hospital, Townsville, QLD, Australia. [email protected].
⁴⁷ Institute for Molecular Bioscience and Faculty of Medicine, The University of Queensland, Brisbane, QLD, Australia. [email protected].

^# Contributed equally.

Abstract

The KidGen Collaborative's Policy Implementation Workshop 2023 celebrated the 10th anniversary of Australia's first kidney genetics clinic in Brisbane. This event marked the establishment of a national network now comprising 19 kidney genetics clinics across Australia, all dedicated to providing equitable access to genomic testing for families affected by genetic kidney diseases. The workshop reflected on past progress and outlined future objectives for kidney genetics in Australia, recognising the collaborative efforts of clinical teams, researchers, and patients. Key insights from the workshop are documented in the proceedings.

Keywords: Creative problem-solving; Genomic testing; KidGen; Kidney disease; Personalised medicine.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Australia
Genetic Testing / trends
Humans
Kidney Diseases* / genetics

Grants and funding

4-E8LEZOZ/Australian Government Department of Health and Aged Care