WE TAKE
GOOD CARE

The project is coordinated by a National Steering Committee
who oversee all phases of the study.

chief investigators
Doctor Simon Carter
Doctor Simon Carter
Academic Paediatric Nephrologist at the Royal Children’s Hospital, Melbourne.
Doctor Hugh McCarthy
Doctor Hugh McCarthy
Paediatric Nephrologist at the Sydney Children’s Hospitals Network
Doctor Anke Raaijmakers
Doctor Anke Raaijmakers
Pediatric Nephrologist at The Sydney Children's Hospital, Randwick, Sydney and conjoint senior lecturer at the University of New South Wales
Doctor Steven McTaggart
Doctor Steven McTaggart
Pediatric Nephrologist at Queensland Children's Hospital, Brisbane and Executive Director Medical Services at Children's Health Queensland
Doctor Robin Turner
Doctor Robin Turner
Senior Research Fellow, School of Public Health, University of Sydney
Doctor Anita van Zwieten
Doctor Anita van Zwieten
Epidemiologist and Lecturer at the School of Public Health, The University of Sydney
Associate Professor Armando Teixeira-Pinto
Associate Professor Armando Teixeira-Pinto
Senior Research Fellow at School of Public Health at University of Sydney
Professor Suncica Lah
Professor Suncica Lah
Professor of Clinical Neuropsychology at the School of Psychology, The University of Sydney
Doctor Tonya Kara
Doctor Tonya Kara
Paediatric Nephrologist at Starship Children’s Health Auckland
Doctor Amanda Walker
Doctor Amanda Walker
Director of Nephrology at Royal Children’s Hospital in Melbourne
Doctor Siah Kim
Doctor Siah Kim
Paediatric Nephrologist at The Children’s Hospital, Westmead
Doctor Fiona Mackie
Doctor Fiona Mackie
Paediatric Nephrologist at Sydney Children’s Hospital
Doctor Anna Francis
Doctor Anna Francis
Paediatric Nephrologist at Queensland Children’s Hospital, Brisbane
Doctor Belinda Barton
Doctor Belinda Barton
Head of Children’s Hospital Education Research Institute, The Children’s Hospital at Westmead
Doctor Gabrielle Williams
Doctor Gabrielle Williams
Research Fellow at the School of Public Health at University of Sydney
Professor Kirsten Howard
Professor Kirsten Howard
Research Professor in Health Economics at School of Public Health at University of Sydney
Professor Allison Jauré (nee Tong)
Professor Allison Jauré (nee Tong)
Principal Research Fellow at the School of Public Health at University of Sydney
Professor Jonathan Craig
Professor Jonathan Craig
Vice-President and Executive Dean of the College of Medicine and Public Health at Flinders University and Matthew Flinders Distinguished Professor
Associate Professor Germaine Wong
Associate Professor Germaine Wong
Principal Research Fellow at the School of Public Health at University of Sydney; Transplant Nephrologist at Westmead Hospital
associate researchers/investigators
Anh Kieu
Anh Kieu
Data Manager at the Centre for Kidney Research, Children’s Hospital at Westmead
Brendan Cusack
Brendan Cusack
Haemodialysis Coordinator at Royal Children’s Hospital Melbourne
Kerry Chen
Kerry Chen
Research Assistant at School of Public Health at University of Sydney
Doctor Madeleine Didsbury
Doctor Madeleine Didsbury
Research Assistant at School of Public Health at University of Sydney
Laura James
Laura James
Research Assistant at School of Public Health at University of Sydney
Doctor Jennifer Lorenzo
Doctor Jennifer Lorenzo
Developmental and Educational Psychologist at The Children’s Hospital at Westmead
Having a holistic understanding of how chronic kidney disease affects both children and their families matters to us. We know that families are affected emotionally, logistically, and financially. It's not always possible to share all this in a 30 minute consultation, though, so taking the time to figure out what really happens behind the scenes and the ways that the clinical team can provide meaningful long-term support is key.
Clinician
Not working was hard. Every time I decided, okay, right that's it, this is the next five year plan, this is what we're going to do, she'd end up in hospital.
Mother, 40s
You have to borrow some money then you have to repay that borrowed money back. We borrowed some money a couple of times. We had to pay it back and we're broke again. So we had to pay that back and you can't keep doing that or you're back in the same spot all the time. So we try and do it off our own backs and it doesn't always work.
Father, 40s