Cystic Fibrosis is the most common genetic disease suffered by our Australian children today. The much needed funding that comes from The Great Escape goes to the Cystic Fibrosis National Data Registry (NDR) and support services. The information gathered from the Registry is highly competitive in the international arena.

The NDR enables us to care for people who suffer from Cystic Fibrosis and to monitor disease progression and mortality on a national scale. This also involves genetic research, and allows us to study the impact of new treatment and technology. The Registry also assists multi-centre trials, nationally and internationally.

It is our mission to see that every person with Cystic Fibrosis no matter what age or sex is entitled to the very best care whether they live within walking distance from a major CF Centre or in the most remote part of Australia. To do this, we have to know where these people live, to be able to provide accurate information in order to gain funding.

Carmel Moriarty RN
Research Nurse
Department of Respiratory Medicine
Royal Prince Alfred Hospital

For more information click here

http://www.cysticfibrosis.org.au/projects/dataregistry/