Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF.
Every four days a baby is born in Australia with cystic fibrosis (CF) and more than one million Australians are carriers of cystic fibrosis. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 37 to 50 years by 2025.
Cystic Fibrosis is a recessive genetic condition. It primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
In addition to working for a cure, Cystic Fibrosis Australia also provides support and advocacy to improve the lives of people with cystic fibrosis. Get involved by raising awareness about CF, participating in a fundraising event or volunteering.
Cystic Fibrosis Australia has established a consistent approach to advocacy across Australia and is now a subject matter expert for government, industry and the media.
The Australian Cystic Fibrosis Research Trust (ACFRT) is managed by Cystic Fibrosis Australia (CFA). Since 1989 it has funded more than 300 projects valued at over $6,000,000.
Visit the media room to browse through number of resources including media representatives, press releases and reports.
Clinical trials are listed below.
OtherEnrolling Location: NSW - Australia
Neurocognitive function, sleep and well-being in patients with Cystic Fibrosis with mild lung disease , protocol number ACTRN12616000454471
This will be an observational study in CF patients with mild lung disease, examining the relationship between neurocognitive function and sleep parameters. Additional factors to be studied include hypoxemia, inflammatory markers, circadian rhythm and mood. CF participants will be tested at baseline, during and after lung exacerbation. Age and education matched non-CF controls will be invited to participate as well. Summary of tests to be performed at each visit. 1. Sleep study with high density EEG 2. Blood tests 3. Activity and oxygen monitoring with watches 4. Neurocognitive tests and Questionnaires.
Age:
18 to 75 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
Excercise alone versus exercise and positive expiratory pressure as a form of airway secretion clearance in adults with mild cystic fibrosis-related respiratory disease - a feasibility study. , protocol number ACTRN12615001361594
Participants will do four weeks of 'usual' care involving daily breathing exercises (PEP) and walking, running or step ups. After 4 weeks, those who have adhered to these requirements will be randomly allocated to either continue this routine or to stop the PEP and to just continue with the walking, running or step ups for 3 months. Participants will be assessed before and after the four weeks of usual care and at the end of the three month intervention phase.
18 Years
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US & Australia
A Phase 2 Study to evaluate efficacy and safety of VX-561 in adults 18 years and older with cystic fibrosis , protocol number NCT03911713 VERTEX VX-561-101
This study will look at the safety and effectiveness of the drug VX-561, a drug intended to help CFTR function closer to normal. This study is randomized and placebo-controlled. This means that some participants will receive one of four dose levels of the study drug, some participants will receive ivacaftor, and some participants will receive placebo. In this study, researchers will test the effectiveness of VX-561 by monitoring lung function. They will also monitor sweat chloride and adverse events. This study may require lung function tests, blood samples, and/or other measures.
18 years and Older
One Copy F508del or No Copies F508del
40 to 100%
8
16 weeks
Restore CFTR FunctionEnrolling Location: Australia
A Study to Evaluate the Effect of VX-661 in Combination With Ivacaftor on Chest Imaging Endpoints in Subjects With Cystic Fibrosis, Homozygous for the F508del CFTR Mutation , protocol number NCT02730208 VX15-661-112
A Phase 2, Randomized, Placebo-Controlled, Double-blind Study to Evaluate the Effect of VX-661 in Combination With Ivacaftor on Chest Imaging Endpoints in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous for the F508del CFTR Mutation
>12 years
Homozygous for the F508del CFTR mutation
ppFEV1 ≥70% of predicted normal
Not Specified
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US & NSW, Australia
Study of VX-445 triple combination in children 6-11 years old with cystic fibrosis , protocol number NCT03691779 VX18-445-106
This study will look at the safety and effectiveness of three CFTR modulators when taken in combination: VX-445 (elexacaftor), tezacaftor and ivacaftor. CFTR modulators are drugs intended to help CFTR protein function closer to normal.
6 Years to 11 Years
Two Copies F508del or One Copy F508del
40% or greater
9
32
Restore CFTR FunctionCompleted with results Location: Multiple care centres across the US & Australia
Phase 1/2 Study of VX-445 combination drug in healthy adults and then in people with cystic fibrosis. , protocol number NCT03227471 VX16-445-001
This study is taking place at multiple care centres across the US and Australia. It will look at the safety and effectiveness of the drug VX-445.
18 years and older
No mutation requirement
40-90%
6
12 weeks
Restore CFTR FunctionClosed to enrollment Location: Australia
A Study of the Effects of Lumacaftor/Ivacaftor on Exercise Tolerance in Subjects With Cystic Fibrosis, Homozygous for the F508del-CFTR Mutation , protocol number NCT02875366 VX15-809-112
A Phase 4, Randomized, Double-Blind, Placebo-Controlled, Parallel-Design Study of the Effect of Lumacaftor/Ivacaftor Combination Therapy on Exercise Tolerance in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous for the F508del-CFTR Mutation
Homozygous F508del
FEV1 at least 40% and not greater than 90% of predicted.
OtherActive, not recruiting Location: Australia, Melbourne
CPET in CF patients with one G551D mutation taking VX770 , protocol number NCT01937325
Double-blind, placebo-controlled cross-over study of 20 patients currently awaiting initiation of ivacaftor therapy.
16-70 years
Hetrozygous G551D
> 25%
224 days
ObservationalEnrolling Location: Australia, Melbourne
The Prevalence and Significance of Gastro-oesophageal Reflux in Adults With Cystic Fibrosis Before and After Lung Transplantation, Together With the Effects of Physiotherapy Airway Clearance Techniques on Gastro-oesophageal Function , protocol number NCT00164021 NCT00164021
A factorial longitudinal study will be undertaken in adults with cystic fibrosis. Results will be compared with age matched healthy controls. It is not deemed appropriate to randomise patients with gastro-oesophageal reflux(GOR) to a treatment versus no treatment group as immediate treatment for GOR once diagnosed is regarded as obligatory. Subjects: 180 adults with CF will be recruited from the Adult Cystic Fibrosis Unit at the Alfred Hospital to participate in the study. The ambulatory studies will be undertaken during baseline state in the outpatient setting. Fifteen age matched control subjects will be recruited from the general population.
OtherEnrolling Location: Australia - VIC
The Alfred Step Test Exercise Protocols (A-STEP and A-STEPmax): Developed for Adults With Cystic Fibrosis (A-STEP/max) , protocol number NCT02717650
Feasibility and Validation of the Alfred Step Test Exercise Protocols (A-STEP and A-STEPmax): Developed to Assess Exercise Tolerance and Determine Maximum Oxygen Uptake in Adults With Cystic Fibrosis Across the Disease Spectrum
>18 years
FEV1 greater than 20%