Alex Hawke (Mitchell, Liberal Party) Share this | Link to this | Hansard source

In late November 2012, I was honoured to open and welcome the new National Office of Cystic Fibrosis Australia into the electorate of Mitchell and the Norwest Business Park. It was fantastic to meet with the national president, Mitch Messer, and the national CEO, David Jack, and all of the state presidents and CEOs of Cystic Fibrosis Australia. It was an exciting gathering and it was fantastic to welcome this dynamic institution into my community. As members would know, cystic fibrosis is an inherited recessive genetic condition. If two people are genetic carriers for cystic fibrosis and they have a child, there is a great chance that the child will have cystic fibrosis. The national body supports people with cystic fibrosis by delivering a range of programs including information and knowledge, research, advocacy, quality improvement in health care, awareness and understanding, and national leadership. Investment last year in these areas totalled in excess of $1.2 million, with over $500,000 invested in research. It is, once again, amazing to see an institution like this national body operate without government funding and achieve great things, purely on the basis of citizens' contributions and business and other contributions.

At the launch, after meeting with the presidents and hearing from them, it was time to launch the national data registry. In 1996, Cystic Fibrosis Australia decided to set up a national data registry. Over the next two years, all aspects of developing the data registry were explored and a model released in '98. This model is something that the Minister for Health and the Department of Health and Ageing could take a good look at for use in other areas. This national data registry is a way of ensuring that all of the data from the patient experience is captured from all of the individual cystic fibrosis centres in Australia. The data registry report is very effective. It highlights some of the progress that is being made, and it could provide a good model for application in other diseases and other areas. Using the data from these centres in Australia, the primary aim of the register is to monitor the disease, but it also tells us, after a decade of reports, where progress has been made and where disease trends are changing. An accurate and adequately funded data registry is an essential information source for any group or organisation seeking to provide accurate information, education and research resources. It will help ensure that limited and scarce government funds and community funds are being spent in the right direction.

It was a great privilege to launch the 2012 and 2013 cystic fibrosis data registry report. It is a great honour to have Cystic Fibrosis Australia join us in Mitchell, but I congratulate them on the great work that they are doing nationally. On behalf of all of the Mitchell community, I welcome them and wish them all the very best for their future endeavours.