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 47 to 55 years by 2026.
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.
Restore CFTR FunctionClosed to enrollment Location: Montreal, Toronto and Vancouver
A phase 3 rollover study evaluating the long-term safety and efficacy of VX-445 triple combination therapy (VX18-445-110) , protocol number VX-445-100 NCT04058366
This study will evaluate the long-term safety, efficacy and pharmacodynamics of elexacaftor (ELX, VX-445) in triple combination (TC) with texacaftor (TEX) and ivacaftor (IVA) in subjects with cystic fibrosis (CF) who are heterozygous for the F508del mutation and a gating or residual function mutation (F/G and F/RF genotypes).
Age:
12+
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
Length of Participation:
96 weeks
Restore CFTR FunctionClosed to enrollment Location: Vancouver & Toronto
A phase 3 rollover study evaluating the long-term safety and efficacy of VX-445 combination therapy in subjects with cystic fibrosis who are 6 years of age and older (VX 18-445-107) , protocol number VX 18-445-107 NCT04183790
This study will evaluate the long-term safety, tolerability, efficacy and pharmacodynamics of elexacaftor (ELX, VX-445) in triple combination (TC) with tezacaftor (TEZ) and ivacaftor (IVA) in subjects with cystic fibrosis (CF).
6+
Anti-InfectiveEnrolling Location: ABATE: Study to evaluate IV gallium in adults with cystic fibrosis who have nontuberculous mycobacteria (NTM)
ABATE: Study to evaluate IV gallium in adults with cystic fibrosis who have nontuberculous mycobacteria (NTM) , protocol number NCT04294043 NCT04294043
This study is taking place at multiple care centres across the U.S. It will look at the safety and tolerability IV gallium, a drug intended to treat infections in the lung.
18 Years and Older
No Mutation Requirement
25% of greater
8
20 weeks
Anti-InflammatoryEnrolling Location: Pennsylvania, USA
Study to evaluate CB-280 in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (CX-280-202) , protocol number CX-280-202 NCT04279769
This study will look at the safety and tolerability of CB-280, an oral drug taken twice a day intended to treat infections in the lung. Multiple doses of the drug will be tested in adults with cystic fibrosis and chronic Pseudomonas aeruginosa to find the best dose.
40 to 90%
6
2 months
Restore CFTR FunctionEnrolling Location: Multiples sites across the United States
Study of ELX-02 in adults with cystic fibrosis who have at least one G542X mutation , protocol number ELX-02 Eloxx-EL-012
This study will look at the safety and tolerability of ELX-02 and how the body processes the drug, a molecule intended to restore CFTR function. Multiple doses of ELX-02 will be tested in adults with cystic fibrosis who have at least one G542X mutation.
No Copies F508del
40% or greater
15
15 weeks
Anti-InflammatoryRecruiting Location: Multiple centres across the US & Australia
Study of LAU-7b in the Treatment of Cystic Fibrosis in Adults (APPLAUD) , protocol number Laurent LAU-14-01 NCT03265288
An international Phase II, double-blind, randomized, placebo-controlled study to evaluate the safety and efficacy of LAU-7b administered once-daily for 6 months for the treatment of CF.
No Mutation Required
between 40% and 100%
189 days
OtherNot yet recruiting Location: Australia - QLD
Orkambi in patients with cystic fibrosis and severe liver disease , protocol number ACTRN12619001347156
This is a pharmacokinetic study of Lumacaftor/Ivacaftor (Orkambi) in children between 6 years and 18 years of age who are homozygous for Phe508del-CFTR with severe cystic fibrosis related liver disease
6 and 18 years Old
Phe508del-CFTR
OtherRecruiting Location: Australia
The OBSERVE Cystic Fibrosis (CF) Study, to assess the effect of orkambi on people with CF in Australia , protocol number ACTRN12619000411145
Aim: To determine the safety and efficacy of LUM/IVA in subjects >12 years of age with CF, homozygous for F508del mutation of CFTR and an FEV1<40% of predicted normal, by comparing those patients treated with LUM/IVA with a cohort of age and sex matched CF controls with another set of mutations that lead to severe CFTR dysfunction (belonging to Class I, II or III), with an FEV1<40%5.
6 Years to 85 Years
F508del
FEV <40%
OtherClosed to enrollment Location: Australia - WA
Effects of high intensity interval training on exercise capacity in people with cystic fibrosis , protocol number ACTRN12617001271392
Currently, exercise guidelines for people with cystic fibrosis (CF) recommend 30 to 60 minutes of aerobic exercise on most days; a recommendation that is consistent with that provided for the general population. In addition to the usual demands on a person’s time such as work, study and family, people with CF have a high daily treatment burden involving airway clearance, medical and nutritional treatment, which are can take up to 4 hours per day to be completed. Therefore, completing 30 to 60 minutes of exercise per day can be difficult to achieve. A novel training approach, such as high intensity interval training (HIIT) may represent a more efficient option to increase exercise capacity. High intensity interval training has been demonstrated to improve exercise capacity in healthy individuals, as well as people with chronic respiratory disease. The main benefit of HIIT is the reduced time commitment, compared to other forms of exercise training. Currently, there are no guidelines for the use of HIIT in people with CF. The proposed PhD will, in people with CF, implement a HIIT program in a supervised setting over an 8 week period to investigate the effects of the program on exercise capacity, health-related quality of life (HRQoL), exercise self-efficacy, feelings of anxiety, depression, enjoyment and muscle oxidative capacity. It will also report on: (i) the proportion of participants who develop post-exercise muscle soreness and the severity of these symptoms; (ii) the tolerance of the HIIT program; (iii) the cardiorespiratory and symptom responses to HIIT over the 8 week program and; (iv) the behaviour change techniques. We hypothesize that in people with CF, 8 weeks of supervised HIIT will change exercise capacity, HRQoL, exercise self-efficacy, enjoyment and muscle oxidative capacity over and above any change seen with usual care.
16 Years and Older
Action: PACT. Be Active. Online. A trial to promote physical activity in young people with cystic fibrosis. , protocol number ACTRN12617001009303
Cystic Fibrosis (CF) is a complex, progressive, life-limiting disease that predominantly affects children and young adults. ‘Flare-ups’ of CF lung disease are common in people with this condition and often lead to admission to hospital and decline in lung capacity, imposing considerable burden on patients, their families and the healthcare system. Physical activity (PA) participation is a low-cost, easily accessible treatment option that has the potential to reduce the impact and progression of chronic lung disease in CF and may help reduce ‘flare ups’ of lung disease. However uptake and adherence to PA and exercise rehabilitation programs by young people with CF is poor. Advances in Internet technology and accessibility have made it possible for people to receive specialist medical care and rehabilitation therapy without attending the hospital. By using a secure website, readily accessible on any smartphone, tablet, laptop or computer it is possible for young people with CF to track their PA participation and receive feedback – at any time and place of their choosing. The aim of this project is to determine whether use of an online program to track PA participation and provide feedback, is more effective than usual care at improving PA participation, exercise capacity and quality of life, and prolonging the time to next hospital admission. People who agree to take part in the study will be randomly allocated to use the online program via the Internet, or to usual post-hospital care. At the beginning and end of the 12 weeks of the intervention phase, and at 3-months post completion of the intervention period, all participants will undergo measurements of PA participation, exercise capacity and health status. At 12 months- post completion of the intervention, hospital medical records will be reviewed to determine the frequency of hospital admission and number of hospital days. It is hypothesized that: 1. The web-based intervention will improve uptake and partic
12 Years to 35 Years Maximum