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Professor Allison Jauré (nee Tong) is a Principal Research Fellow at the Sydney School of Public Health, The University of Sydney; and is Co-Director of the Centre for Kidney Research at The Children’s Hospital at Westmead. She has experience in patient-centred outcomes research in chronic disease, particularly chronic kidney disease. Allison has an interest in patient involvement in research, including in the context of research priority setting, the development of core outcomes for research, and in the co-production of clinical trials. She co-founded and is on the Executive Committee of the global Standardised Outcomes in Nephrology (SONG) Initiative, which aims to establish consensus-based core outcomes across the spectrum of chronic kidney disease (www.songinitiative.org). She established the Patient-Centred Research Network (PACER, www.pacernetwork.org.au) network, which aims to facilitate knowledge exchange, cross-disciplinary collaboration, and innovation in conducting and implementing patient-centred outcomes research and patient involvement in research.
Patients and their family members/caregivers bring a wealth of valuable insights, knowledge, experience, expertise and skills to research, and their generosity of contribution is always such as an inspiration to me
Professor Jonathan Craig MBChB, MMed (Clin Epi), DipCH, PhD, FAHMS is a paediatric nephrologist and clinical
epidemiologist at Flinders University. He is the Vice President and Executive Dean of the College of Medicine and
Public Health, Flinders University and has broad expertise in clinical epidemiology, health technology assessment,
child health, Aboriginal health and kidney disease. His work has been recognised with awards from the National Kidney Foundation, the Italian Society of Nephrology, Kidney Health Australia (KHA), and the Australia and New Zealand Society of Nephrology (ANZSN). Jonathan has held senior leadership positions in Cochrane, Kidney Disease: improving Global Outcomes (KDIGO), National Health and Medical Research Council (NHMRC), KHA and ANZSN.
Professor Carmel Hawley, MBBS, FRACP, MMedSci, is co-founder of the Australasian Kidney Trials Network
(AKTN), the world’s first collaborative kidney research network. Carmel chairs the Standardised Outcomes In Nephrology (SONG) Vascular Access Expert Working Group, a global partnership of researchers and consumers. She is an authority in managing risk for patient safety and data integrity and has led the establishment of several Data and Safety Monitoring Boards for clinical trials. She has received numerous awards, most recently the Kincaid-Smith Medal in recognition of her outstanding clinical and scientific achievements in nephrology. Carmel is internationally recognised for her expertise in the design and conduct of randomised clinical trials.
Consumer partnerships in kidney research add invaluable insights into what it’s like to have kidney disease, what the priorities should be in research endeavours, and how we can make improvements together.
Professor Germaine Wong, MBBS, MMed (ClinEpi), FRACP, PhD, is Medical Director of the Western Renal Service of the Western Sydney Local Health District and Co-Director of the Centre for Kidney Research. She is a transplant nephrologist and epidemiologist with extensive experience in conducting large scale research studies to improve patient-prioritised outcomes in chronic kidney disease (CKD). Her research interests include CKD-related health services research, cancer screening, deceased donor allocation and the quality of life of children and young adolescents. Germaine is the Key Opinion Leader and Pillar 2 Chair of the Women in Transplantation of The Transplantation Society.
Patient-centre care and research is about embedding and respecting patients’ voices, preferences and choices in everything we do as clinician-scientist
Professor David Johnson, PSM, MB BS (Hons), DMed (Res), FRACP, FASN, FAHMS, PhD, is Director of the Metro South Integrated Nephrology and Transplant Service (MINTS), the Queensland Kidney Transplant Service (QKTS) and the Centre for Kidney Disease Research (CKDR), Brisbane, Australia. David is an internationally recognised expert in clinical trials, peritoneal dialysis and chronic kidney disease (CKD). He has held leadership positions in Caring for Australians and New Zealanders with Kidney Impairment (CARI), International Society for Peritoneal Dialysis (ISPD), International Society of Nephrology (ISN), and the Australian and New Zealand Society of Nephology (ANZSN). David is the Co-Chair of the ISN Global Kidney Health Atlas Project, the largest public health survey in the world, and has led two of the most successful nephrology implementation programs in the world, which have improved the detection of CKD (particularly in Indigenous and elderly patients) in Australia and New Zealand and reduced national peritoneal dialysis infection rates.
Dr Nicole Scholes-Robertson, BAppSci (Physiotherapy), PhD is a physiotherapist with lived experience of dialysis and transplantation. She is a post-doctoral researcher at The University of Sydney and a Patient Partner at the Centre for Kidney Research. Her interests include rural patient access to kidney replacement therapy and consumer/patient involvement in research. She is Co-Chair of the BEAT-CKD Consumer Advisory Board, consumer member of the Australasian Kidney Trials network (AKTN) scientific committee, member of the consumer guideline writing group with CARI Guidelines and is on the SONG-GN Steering Committee. Nicki is also the Consumer Editor for Cochrane Kidney and Transplant. She is a skilled trainer with extensive experience designing and conducting workshops on patient involvement in research with clinicians, researchers, and patients.
As a person with CKD, I don’t want to be a passive observer in my journey with kidney disease. Involvement in research encourages active participation in our disease and furthers everyone’s knowledge. Through CRE-PACT we are able to ensure that more consumers are able to be involved, and researchers and clinicians are trained and equipped to facilitate this.
Professor Stephen McDonald, MBBS, PhD, FRACP, is a nephrologist and Director of Dialysis at the Royal Adelaide
Hospital, and Clinical Director of Renal Services for Country Health, South Australia. He is Executive Officer of the
Australia and New Zealand Dialysis and Transplant Registry. Stephen has spearheaded the use of the ANZDATA registry for clinical research and health services planning. In the clinical arena, Stephen has overseen the growth of dialysis throughout country South Australia, with a doubling in the number of patients in rural communities over the past 5 years, and the successful commissioning of a mobile dialysis truck for remote Indigenous communities. In 2015, he received the TJ Neale Award for outstanding contribution to nephrology.
Professor Kirsten Howard, BSc (Hons1), MAppSc, MPH, MHlthEc, PhD, is Professor of Health Economics at The
University of Sydney School of Public Health. She has led economic valuations of many intervention trials in kidney disease and has studied patient and consumer preferences in areas as diverse as cancer screening, aged care services, exercise interventions for older people, dialysis services and organ donation policy. She is a member of the Pharmaceutical Benefits Advisory Committee (PBAC) and chair of the PBAC Economics Sub-Committee, member of the Kidney Health Australia National Strategic Action Plan for Kidney Disease Advisory Group, and member of the NHMRC Expert Advisory Group for the development of Ethical Guidelines in organ transplantation.
Associate Professor Shilpanjali Jesudason, MBBS, PhD, FRACP is a nephrologist, Clinical Associate Professor at the University of Adelaide and Chair of the Clinical Research Group at the Royal Adelaide Hospital’s Central Northern Adelaide Renal and Transplant Service (CNARTS). She is internationally recognised as an expert in parenthood in people with kidney disease and has significant expertise in patient partnership. She has served as the National Clinical Director of Kidney Health Australia (KHA) from 2017-2020, during which she led the development of the Commonwealth National Strategic Action Plan for Kidney Disease, Community consultations for inaugural Indigenous Kidney Disease Clinical Guidelines and the KHA Youth Program National Consensus Statement for Transition from Pediatric to Adult kidney care.
I am honored to be part of the CRE-PACT team to make sure future kidney research in Australia is a true partnership with consumers and has the best chance of improving patient lives.
Professor Armando Teixeira-Pinto, BSc (Mathematics) MSc PhD, is a biostatistician at The University of Sydney School of Public Health. He completed his Masters and PhD in Biostatistics at Harvard University in 2007. He has an extensive record of collaborative research in clinical, epidemiological and health services research. He is Senior Statistical Editor for Circulation:CQO, and Cochrane Kidney and Transplant. Armando’s internationally recognised research has focused on the development of statistical methods for pooling information to inform decision-making. His work has been applied in the fields of nephrology, psychology, neurology, paediatrics, cardiovascular disease, and obesity.
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