{"id":3897,"date":"2014-02-11T03:44:42","date_gmt":"2014-02-10T16:44:42","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=3897"},"modified":"2015-04-29T12:06:37","modified_gmt":"2015-04-29T02:06:37","slug":"new-victorian-alliance-to-unlock-genetic-disease-secrets","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/new-victorian-alliance-to-unlock-genetic-disease-secrets\/","title":{"rendered":"New Victorian alliance to unlock genetic disease secrets"},"content":{"rendered":"
\"MSS_9679\"<\/a>
(L-R) Melbourne Genomics Health Alliance CEO members: Professor Doug Hilton, Walter and Eliza Hall Institute of Medical Research (WEHI); Professor Lynne Cobiac, CSIRO; Dr Gareth Goodier, The Royal Melbourne Hospital; Professor Stephen Smith, University of Melbourne; Professor Christine Kilpatrick, Royal Children\u2019s Hospital; Dr Sue Forrest, Australian Genome Research Facility; Professor Kathryn North, Murdoch Childrens Research Institute. Pictured with RCH family (centre) Donna Beckhurst with children Chloe and Hannah.<\/figcaption><\/figure>\n

Truly personalised healthcare is one step closer to becoming a reality for Victorians and Australians, with the launch of the Melbourne Genomics Health Alliance at The Royal Children\u2019s Hospital (RCH) today.<\/p>\n

The Alliance combines the strengths of seven Parkville Precinct organisations, all working towards the one goal of integrating genomic information into everyday healthcare.
\nDr Gareth Goodier, Head of the Alliance CEOs group and CEO of The Royal Melbourne Hospital, said genomics represented a new and burgeoning era of medicine, with endless possibilities.<\/p>\n

\u201cHealthcare need no longer take a \u2018one size fits all\u2019 approach. Genomic sequencing allows us to identify when a person\u2019s genetic building blocks are stacked slightly differently in sections to those of the average person,\u201d Dr Goodier said.<\/p>\n

\u201cWith new technologies making it possible to gather large amounts of genetic information quicker and cheaper than before, genetic information is increasingly influencing diagnosis and care,\u201d he said.<\/p>\n

In simple terms, genomics is the simultaneous analysis of the genetic information contained in the DNA in each cell of our body. Collectively, this information is known as our genome. By sequencing the DNA in our genome, it is possible to identify variations responsible for causing disease.<\/p>\n

\u201cArmed with this information, we can investigate whether certain DNA variations are responsible for causing disease. With further research we hope to support more accurate diagnosis and prognosis, identify patients at greater risk of disease or complications, and select and prioritise therapy in the prevention and control of infection outbreaks,\u201d Dr Goodier said.<\/p>\n

The Alliance brings together some of the very best health, research and education organisations in the state \u2013 the RCH, The Royal Melbourne Hospital, The University of Melbourne, Walter and Eliza Hall Institute, CSIRO, Murdoch Childrens Research Institute and the Australian Genome Research Facility.<\/p>\n

By joining forces, these organisations will contribute to a seamless, translational effort: Hospital patients with genetic conditions can have their genome sequenced by scientists; researchers will analyse the genomic information obtained and initiate further research into genetic diseases and treatments; and research findings will inform evidenced based improvements to the clinical care provided to patients.<\/p>\n

Genomic data will be accessible to clinicians at each of the Alliance member hospitals, across a patient\u2019s lifecycle. Researchers will have ethical access to genome data and a clear pathway for translation of their research discoveries into clinical care.<\/p>\n

While genomic sequencing requires innovative science and cutting edge technology, the Alliance prides itself on being clinically led. A precinct-wide Community Advisory Group has been established \u2013 a Victorian first \u2013 to ensure \u2018the patient\u2019 always comes first.<\/p>\n

\u201cThe Alliance is an exciting step towards ensuring that this technology is made available to the public. Ultimately, it is the individuals and families who will benefit from the field of genomics, and so it makes sense that we as consumers help design the system to access this technology,\u201d Liat Harrower, Alliance Community Advisory Group member said.<\/p>\n

One family who stands to benefit from the Alliance\u2019s achievements is Donna Beckhurst and her two daughters Chloe, 9yo, and Hannah, 4yo. Donna, Chloe and Hannah all have the same neuropathic genetic condition, which causes extreme muscle weakness. But, despite a lifetime of hospital management, very little is known about the condition and how it can be treated.<\/p>\n

\u201cWe still don\u2019t 100 per cent know what condition we have. We know we have something, we know it\u2019s a muscle weakness that makes climbing stairs impossible for me and keeping up with other children a challenge for Chloe and Hannah, but it would be nice to have some answers,\u201d Donna said.<\/p>\n

\u201cHopefully, this Alliance can find answers for our family, and those answers can benefit other families experiencing the same unknowns as us,\u201d she said.<\/p>\n

RCH CEO, Professor Christine Kilpatrick, said the RCH was proud to be an Alliance member for the positive and ongoing impact it will have on children\u2019s health right through into adulthood.<\/p>\n

\u201cThe Alliance\u2019s goal is to integrate genomic information into everyday healthcare. It\u2019s an ambitious vision, but one that is indeed achievable, when you consider the Parkville Precinct is a mecca for some of the best health, research and education organisations in the world,\u201d Professor Kilpatrick said.<\/p>\n

The Alliance has commenced recruiting patients for phase one of the project. Once this phase is complete and evaluated, a plan for implementation and funding of the Alliance\u2019s full vision will be developed.<\/p>\n","protected":false},"excerpt":{"rendered":"

Truly personalised healthcare is one step closer to becoming a reality with the launch of the Melbourne Genomics Health Alliance.<\/p>\n","protected":false},"author":41,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6],"tags":[],"class_list":["post-3897","post","type-post","status-publish","format-standard","hentry","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3897","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=3897"}],"version-history":[{"count":14,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3897\/revisions"}],"predecessor-version":[{"id":3938,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3897\/revisions\/3938"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=3897"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=3897"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=3897"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}