A Queensland registry of pre-dialysis chronic kidney disease patients has become one of the largest resources of its type in the world.
The registry is among projects being undertaken by Australia’s first NHMRC Chronic Kidney Disease Centre of Research Excellence.
University of Queensland Professor Wendy Hoy heads the centre, and has told a forum the first tranche of data from the registry will provide a treasure trove of information on the growing burden of chronic kidney disease.
“CKD precedes almost all end stage kidney failure, requiring dialysis to prevent death,” Professor Hoy said.
“With current trends, dialysis will place an insurmountable cost on our health system, and we need this data to better understand how we can prevent and manage this disease.”
Professor Hoy said there are now 7,800 patients on the registry which is linked to Queensland Health data sets.
“Our intent is to generate significant information on multiple access of chronic kidney disease, its trajectory and patient outcomes.”
The CRE was established in late 2014 with five-year funding from the National Health and Medical Research Council, and the forum marked the mid-point of its research program.
“The centre is truly collaborative in that it works across research, hospital services, primary care and patient groups,” Professor Hoy said.
“This enables the CRE to look at important issues including ways to improve end-of-life care for this vulnerable group of patients.”
“For many, their end-stage symptoms can be as difficult if not more challenging than those with terminal cancer.”
One of the centre’s projects has linked renal services with palliative care at a single clinic on Brisbane’s north side.
“This model encompasses specialist doctors, pharmacists and social workers developing multi-disciplinary advanced care plans for individual patients, coordinated so that it can be delivered at the one location.”
Partners in the CRE include national academic, NGO and state government health services, with lead engagement with Queensland University of Technology, the University of NSW, Queensland Health, and Kidney Health Australia.
Media: Professor Wendy Hoy, w.hoy@uq.edu.au; Kim Lyell, k.lyell@uq.edu.au, 0427 530647.
