News - Thursday 1st February 2018
We are excited to announce that this morning the Australian Genomics Health Alliance launched four new projects including the KidGen Collaborative HIDDEN Renal Genetics project.
The KidGen Collaborative Director, Dr Andrew Mallett, is delighted to announce the commencement of this research. Together with the other principal investigators, Dr Cathy Quinlan, Dr Zornitza Stark, Dr Chirag Patel, Dr Amali Mallawaarachchi and Dr Cas Simons, and making use of our close collaboration with the diagnostic laboratories, Genome.One and the Victorian Clinical Genetics Services we hope to provide a clinical diagnosis for more patients with end-stage kidney disease of unknown cause. The ‘HIDDEN’ study builds upon the current research of the KidGen Collaborative and our partnership with Kidney Health Australia, to trial whether genomic testing approaches can improve the diagnosis and clinical management of patients with inherited kidney disease.
Here is what the Royal Brisbane and Women’s Hospital had to say about our new flagship project.
Answering questions behind unexplained end stage kidney disease
For the majority, the cause of their kidney disease is known but there are many battling through their disease without any real answers—only adding to the burden and stress that comes with chronic illness.
Royal Brisbane and Women’s Hospital (RBWH) Nephrologist Dr Andrew Mallett hopes to provide these answers through his HIDDEN flagship—one of four rare disease flagship projects announced by Australian Genomics on 1 February.
Dr Mallett has a particular interest in inherited kidney disease and nephrogenetics—the study of kidney diseases that are genetically caused and the care of patients affected by them—and hopes HIDDEN (wHole genome Investigation to iDentify unDEtected Nephropathies) will give his team and his patients the answers they’ve been looking for.
“End stage kidney disease means a patient’s kidneys no longer function properly and they may require treatment like dialysis or a kidney transplant,” Dr Mallett said.
“Unfortunately, my colleagues and I see many patients who don’t know why they have kidney disease. They’ve never had a definitive diagnosis despite our best efforts to identify the cause. And it’s extremely disheartening for them, their families and us as their clinicians.
“Our research will explore genomics, which is an emerging and exciting technology. It allows us to examine the coding of all of our genes, and the changes within them, so that we can understand potential genetic or inheritable causes for diseases.
“We’ll be working with patients with unexplained end stage kidney disease to see if genomics is the key to ‘unlock’ their kidney diagnosis, and help inform their clinical journey from diagnosis and treatment, through to long-term outcomes, and patient and family support.
“This is an exciting step forward for the care of our patients.”
The HIDDEN Flagship is the result of a partnership between the KidGen Collaborative (led nationally by Dr Mallett) and Australian Genomics, and is supported by the Queensland Conjoint Renal Genetics Service of which Metro North Hospital and Health Service’s Kidney Health Service and Genetic Health Queensland are collaborators.
“By partnering with clinicians and researchers, and with our patients, we are able to use genomics to lead initiatives like this and answer the remaining ‘big questions’ in science and healthcare.”
Another article from The University of Queensland - Institute for Molecular Bioscience
Flagship genetics project to uncover hidden figures in chronic kidney disease
and Kidney Health Australia
"HIDDEN" flagship project explores genomics
Meeting Report The KidGen Renal Genetics Symposium,
The KidGen Renal Genetics Symposium 6-8 December 2017 was an enormous success with over 100 attendees.
A report of the meeting has been published Human Genomics and is available on-line
Jayasinghe K, Quinlan C, Stark Z, Patel C, Sampson MG, Saleem M Mallett AJ and on behalf of the KidGen Collaborative Meeting Report of the 2017 KidGen Renal Genetics Symposium, Human Genomics 2018 12:5 https://humgenomics.biomedcentral.com/articles/10.1186/s40246-018-0137-7
For report and recording of Meet the Scientists - Patient Engagement Event see Meetings and Links page
KidGen is an Australian-based collaborative consortium of clinicians, counsellors, scientists and researchers focused on providing a definitive diagnosis to patients with inherited forms of kidney disease. KidGen focuses on delivering clinical care for families with kidney disease. At KidGen, we care about kidneys, we care about kids with kidney disease, we care about the genes that are altered to cause these diseases and we care about the effects these may have on the generations to follow. Through KidGen, we are working to provide equitable access to genomic technology within clinical care for Australian families with kidney disease. At the same time, we are working to better understand these diseases in the hope of developing new treatments.