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Kidney Week

Abstract: INFO19

Evaluating an Australian national network of multidisciplinary renal genetics clinics: the KidGen collaborative

Session Information

  • Informational Posters
    October 25, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category:

  • No subcategory defined

Authors

  • Mallett, Andrew John, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia
  • Quinlan, Catherine, The Royal Children's Hospital, Melbourne, Victoria, Australia
  • Stark, Zornitza, Australian Genomics Health Alliance, Melbourne, New South Wales, Australia
  • Patel, Chirag, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia
  • Goranitis, Ilias, University of Melbourne, Melbourne, New South Wales, Australia
  • Chakera, Aron, Sir Charles Gairdner Hospital, Perth, Queensland, Australia
  • Best, Stephanie, Macquarie University, Sydney, New South Wales, Australia
  • Long, Janet C., Macquarie University, Sydney, New South Wales, Australia
  • Jose, Matthew D., Royal Hobart Hospital, Hobart, Tasmania, Australia
  • Wilkins, Ella J., Victorian Clinical Genetics Services, Parkville, New South Wales, Australia
  • Boughtwood, Tiffany F., Australian Genomics Health Alliance, Melbourne, New South Wales, Australia
  • Simons, Cas, Murdoch Children's Research Institute, Melbourne, Victoria, Australia
  • Mccarthy, Hugh J., Sydney Children's Hospital Network, Sydney, New South Wales, Australia
  • Mallawaarachchi, Amali, Royal Prince Alfred Hospital & Garvan Institute, Sydney, New South Wales, Australia
  • Faull, Randall James, Royal Adelaide Hospital, Adelaide, South Australia, Australia
  • Smyth, Ian, Monash University, Melbourne, Victoria, Australia
  • Healy, Helen G., Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia
  • Little, Melissa H., Murdoch Children's Research Institute, Melbourne, Victoria, Australia
  • Wardrop, Louise H., Murdoch Children's Research Institute, Melbourne, Victoria, Australia

Group or Team Name

  • on behalf of the KidGen Collaborative, Melbourne Genomics and Australian Genomics
Description

The KidGen Collaborative is focussed on providing a definitive diagnosis to patients with genetic kidney disease in a supportive patient setting and furthering research into genetic kidney disease to improve patient treatments and outcomes. The group is an Australian nationwide consortium of nephrologists (adult and pediatric), clinical geneticists, genetic counsellors, genetic laboratory scientists, health service researchers and fundamental science researchers.
The cornerstone of the KidGen Collaborative is the KidGen multidisciplinary renal genetics clinics, the first of which commenced in 2013. These multidisciplinary clinics assess patients with a likely genetic cause for their kidney disease and provide diagnostic testing and genetic counselling. Ongoing treatment and clinical management is provided by referring nephrologists or clinicians in their local communities. Currently there are 16 clinics operating in public hospitals across Australia.
The evaluation of the clinical, translational, educational and testing components of the KidGen Collaborative are funded by the Australian Genomics Health Alliance (www.australiangenomics.org.au) and Melbourne Genomics Health Alliance (www.melbournegenomics.org.au), enabling integrated data collection and lines of enquiry in terms of implementation science and health economic evaluation. The project has funded the initial collection of data that will form the basis of a growing registry of matched genotypic and phenotypic data on Australian patients with inherited kidney disease. More than 180 probands have been recruited with a target of 370 by December 2018.
Building upon this, Australian Genomics and KidGen are embarking upon a national cohort study undertaking clinical whole genome sequencing in Australian patients with end stage kidney disease of uncertain aetiology. The HIDDEN Project (wHole genome Investigation to iDentify unDEtected Nephropathies) commences in July 2018 and will enrol more than 200 participants to June 2020 using an adapted version of the same database, implementation science and health economic evaluation tools.

Funding

  • Australian Genomics Health Alliance, National Health and Medical Research Council, Melbourne Genomics Health Alliance