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.
Anti-InflammatoryNot yet recruiting Location: Brisbane
A double blind, randomized, placebo controlled, cross-over trial investigating the effect of High Amylose Maize Starch (HAMS) supplementation on fecal microbiological and inflammatory outcomes in individuals with Cystic Fibrosis and Healthy Volunteers , protocol number ACTRN12618000283279
Cystic Fibrosis (CF) is associated with a significant increase in gut dysbiosis. Exposure to multiple courses of antibiotics as well as an inherently inflammatory gut contributes to this. We have shown that there are significant differences between the CF gut and healthy volunteers in these respects. High amylose maize starch (HAMS) is a pre-biotic food stuff produced in such a way as to encourage the production of beneficial, anti-inflammatory compounds. In laboratory culture, we have shown that HAMS increases the production of these compounds. What is not clear however is whether this laboratory data translates to a clinical benefit. This study will attempt to understand the impact of HAMS supplementation on the bacteria in the gut and the ability of the gut to make anti-inflammatory compounds, in adult patients with CF as well as in healthy control subjects.
Age:
18 Years and Older
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
Length of Participation:
Nutritional-GIEnrolling Location: Ohio, USA
OPTION 2: Study of AzurRX MS1819 in enteric capsules in adults with cystic fibrosis and exocrine pancreatic insufficiency (AzurRX AZ-CF2002) , protocol number NCT04375878
This study will look at the safety and effectiveness of the drug MS1819 in enteric capsules as a pancreatic enzyme replacement therapy (PERT).
No Mutation Requirement
30% or greater
10
8 weeks
OtherEnrolling Location: Multiple care centres across the US
SIMPLIFY: Study to evaluate stopping inhaled hypertonic saline or dornase alfa in people with CF who are taking the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor , protocol number SIMPLIFY-IP-19 NCT04378153
This study will test the effects and safety of stopping inhaled hypertonic saline or dornase alfa (Pulmozyme®) in teens and adults with CF who are also taking the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor (Trikafta®). Trikafta® is intended to help CFTR function closer to normal, resulting in better clearance of mucus from the lungs. Inhaled hypertonic saline and dornase alfa are intended to thin airway surface liquid and improve clearance of mucus from the lungs. They are considered to be relatively burdensome therapies, so this study will look at the impact of stopping them in people who are also taking Trikafta®.
12 Years and Older
60% or greater
4
10 weeks
Anti-InflammatoryActive, not recruiting Location: Montreal, Toronto and Vancouver
Phase 1b study to evaluate CB-280 in adults with cystic fibrosis and chronic Pseudomonas aeruginosa. , protocol number Calithera CX-280-202 NCT04279769
Patients will receive either CB-280 twice daily orally for 14 days or a placebo
18 Years and older
40% and 90%
2 weeks
Mucociliary ClearanceRecruiting Location: Sir Charles Gairdner Hospital, Perth, WA
Does the MetaNeb®, a new airway clearance device, change lung function in adults with cystic fibrosis when they are hospitalised for a lung infection? , protocol number ACTRN12619001681145
This project will look at the effects of twice daily treatment using a new airway clearance device called the MetaNeb®, on lung function, secretion clearance and CF related symptoms compared to twice daily treatment using ACT in adults with CF who are hospitalised with a respiratory exacerbation. We hypothesise that in adults with CF, hospitalised with a respiratory exacerbation, twice daily MetaNeb® treatment, compared with usual ACT, will produce greater improvements in lung function, secretion clearance, health-related quality of life (HRQoL) and respiratory signs and symptoms. If this device is shown to be more effective than the commonly used techniques, this would be of great clinical significance as it will assist in guiding clinical use of the device throughout CF centres in Australia and internationally.
OtherRecruiting Location: Queensland Children's Hospital, Brisbane
Implementing a comprehensive adherence protocol for children and adolescents living with cystic fibrosis - an implementation study , protocol number ACTRN12619001730190
The primary aim of this project is to evaluate the feasibility, acceptability and appropriateness of implementing a comprehensive adherence protocol into the Queensland Children's Hospital Cystic Fibrosis clinic.
8 Years and 18
OtherRecruiting Location: Royal Prince Alfred Hospital, NSW
Cystic Fibrosis Telehealth Virtual Clinic Initiative , protocol number ACTRN12620000084987
This study will evaluate an updated health care delivery model for patients with cystic fibrosis by incorporating virtual health/telehealth clinics. For patients in the telehealth arm, clinic visits may occur at home, work or at their local GP practice. This will replace in-hospital clinic visits. Patients in this arm however will need to attend at least one in-hospital clinic visit over a 12 months period. Spirometry will be performed at home using a portable spirometer. Patient satisfaction and well-being questionnaires will need to be completed at baseline, 6 and 12 months.
16 Years and Older
1
12 months
Anti-InfectiveEnrolling Location: Vancouver, Calgary, Toronto
A phase 3 study on the use of prednisone in cystic fibrosis pulmonary exacerbations (PIPE) , protocol number PIPE NCT03070522
To evaluate the effectiveness of prednisone as an adjunctive treatment for patients who do not respond to regular IV antibiotics
6+
3 years
Restore CFTR FunctionClosed to enrollment Location: Toronto
A phase 3 rollover study of VX-659 triple combination drug in people 12 years and older who have one copy of the F508del mutation and one copy of a minimal function mutation (VX-659-105) , protocol number VX-659-105 NCT03447262
CFTR function study evaluating the long term safety and efficacy of VX-659 combination therapy
12+
One copy F508del
96 weeks
Restore CFTR FunctionClosed to enrollment Location: Vancouver, Montreal, Toronto
A phase 3 study of tazacaftor (VX-661) combination drug in children aged 6 years and older (VX17-661-116) , protocol number VX17-661-116) NCT03537651
CFTR function study, evaluating the safety and efficacy of long-term treatment with tezacaftor in combination with ivacaftor in subjects aged 6-11 years