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
Randomised controlled trial to be determine whether once-daily insulin detemir slows decline in weight and lung functions in patients with cystic fibrosis and early insulin deficiency. , protocol number NCT01100892 ACTRN13611000068965
Cystic fibrosis (CF) is the most common life-threatening genetic condition affecting Australian children. As well as repeated lung infections, children with CF develop insulin deficiency and eventually diabetes. The CF-IDEA trial (Cystic Fibrosis - Insulin Deficiency, Early Action) will determine whether starting insulin treatment before the onset of diabetes (earlier than current practice) will improve the health of children with CF by improving body weight and lung function.
Age:
5 Years to 19 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
Restore CFTR FunctionCompleted with results Location: USA & Australia
Phase 3 study of Ataluren in people with CF who have a nonsense mutation and are not taking aminoglycosides. , protocol number NCT02139306 PTC124-GD-021-CF
This study is taking place at multiple care centers across the U.S. It looked at the effectiveness and safety of the oral drug ataluren in people with CF who have a nonsense mutation of cystic fibrosis. This study used a placebo control.
6 Years and Older
One Copy F508del or No Copies F508del
60 to 90%
10
56 weeks
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US & Australia
A Study to Evaluate the Safety and Efficacy of Long Term Treatment With VX-661 in Combination With Ivacaftor in Subjects With Cystic Fibrosis Who Have an F508del-CFTR Mutation , protocol number NCT02565914 VX14-661-110
This is a Phase 3, multicenter, open-label, 2-part rollover study in subjects with CF who are homozygous or heterozygous for the F508del-CFTR mutation and who participated in Studies NCT02070744, NCT02347657, NCT02516410, NCT02392234, NCT02412111, and NCT02508207. The study is designed to evaluate the safety and efficacy of long term treatment of VX-661 in combination with ivacaftor.
12 years and older
Not Specified
Restore CFTR FunctionEnrolling Location: Multicentre - Australia 1. Prince Charles Hospital, 2. Lady Cilento, 3. SCGH
Phase 3 study of VX-659 triple combination drug in people with CF 12 years and older who have one copy of the F508del mutation and one copy of a minimal function mutation (VX17-659-102) , protocol number NCT03447249 VX17-659-102
This randomized, placebo-controlled study will be taking place at multiple care centers across the U.S. It will evaluate the effectiveness, safety, and effect on the body of the drug VX-659 in combination with tezacaftor and ivacaftor. It is for people with cystic fibrosis ages 12 and older with one copy of the F508del CFTR mutation and one copy of a minimal function mutation
One copy F508del
40 - 90%
32 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
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
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%