Human Variome Project – Australian Node
| Information | The Human Variome Project is an international non-governmental organisation that is working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared freely and openly. The HVP is a World Health Organization and United Nations Educational, Scientific and Cultural Organization (UNESCO) affiliate organisation with 81 members. The Australian Node connects Australian Genomic Variation data to the world, and helps Australian diagnostic laboratories deliver better results for patients through secure data sharing. As a Country Node member of the Human Variome Project, the Australian Node is Australia’s contribution to global data collection and sharing efforts. Goal Working to ensure that all information on genetic variation and its effect on human health is collected, curated, interpreted and shared globally to improve clinical genetic testing services and support medical research. How it works Information on genetic test results and interpretations is automatically collected from participating laboratories in Australia at the same time as a report is issued to the medical practitioner requesting the test. All information that can potentially be used to identify an individual is removed from the record before it is securely transferred to the Node repository. The Node data is made available to registered users in Australia through the Portal where it can be used to aid the diagnosis and treatment of Australian patients. Some de-identified information on individuals who have consented to research use of their data may be made available to scientists who are undertaking specific research projects into the causes and potential treatments of genetic diseases. Requests for access for research use must undergo review by a Human Research Ethics Committee before being referred to the Australian Node Data Access Committee. |
| Registry Location | Australia |
| Registry Contact | Human Variome Project Australian Node T: +61 3 8572 2700 |
| Adding New Patients to Registry | Get Involved All Australian diagnostic laboratories offering genetic analysis can get involved in the Human Variome Project Australian Node and deposit a de-identified subset of their data in the national repository. The service is free and we can work with you to develop the necessary automated tools to get your internal database talking to ours. All of our software is open-source. If you’re keen, reach out to us and we can talk further. |
| Please see the website for more information |