Australian Cystic Fibrosis Data Registry

The Australian Cystic Fibrosis Data Registry is a collaborative project of all cystic fibrosis clinics in Australia. It was developed in 1996 by Cystic Fibrosis Australia. Cystic Fibrosis data registries exist in many parts of the world, including the US, UK and Europe.

The CF Data Registry is used to provide information about CF in Australia in a way that is useful to the CF clinics. The CF Data Registry provides information, education and research resources to CF health care professionals. National information allows us to gain a better understanding of CF, information about treatments and identify new problems affecting people with CF.

Information from the registry will also help identify areas where the health of patients with CF may be improved by the appropriate allocation of health resources. The information obtained from the registry will be used by CF Australia and health professionals to speak on behalf of patients with CF and their families to lobby for increased funding to all aspects of CF care and research in Australia. You can find out more information on the Australian Cystic Fibrosis Data Registry by going to the CF Australia webpage or clicking here. The last report was published in March 2010 for data collected in 2008.