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.
Nutritional-GIEnrolling Location: Multiple care centres across the US
Study to evaluate Creon in adults with cystic fibrosis or chronic pancreatitis (AbbVie M21-432 ) , protocol number NCT05069597
This study will look at the symptoms of exocrine pancreatic insufficiency (EPI) in adults with cystic fibrosis or chronic pancreatitis treated with Creon with an alternate source of active drug. Creon is a drug approved to treat EPI.
Age:
18 Years and Older
Mutation(s):
No Mutation Requirement
FEV1% Predicted:
No FEV1 Limit
Number of Visits:
3
Length of Participation:
142 days
Anti-InflammatoryEnrolling Location: Multiple US Centres
Study of INS1007/brensocatib tablets in adults with CF (Insmed INS1007-211) , protocol number NCT05090904
This study will look at the safety, tolerability, and how the body processes INS1007/brensocatib tablets, a drug intended to reduce inflammation.
40 to 90%
8
56 days
Restore CFTR FunctionEnrolling Location: Multiple US Centres
Study of VX-121 in people with CF ages 12 years and older who have either two copies of the F508del mutation, one copy of the F508del mutation and one copy of a gating or residual function mutation, or no copies of the F508del mutation and at least one other triple combination responsive CFTR mutation (Vertex VX20-121-103) , protocol number NCT05076149
This study will look at the safety and effectiveness of VX-121/tezacaftor/deutivacaftor, a drug combination intended to help CFTR protein function closer to normal. This study will test once-a-day dosing by using an active comparator. This means that some participants will receive the study drug or a placebo in the morning, and others will receive Trikafta®(elexacaftor/tezacaftor/ivacaftor) or a placebo in the morning and ivacaftor or a placebo in the evening. Researchers will test the effectiveness of the VX-121/tezacaftor/deutivacaftor combination by measuring changes in lung function and sweat chloride. This study may require lung function tests, sweat tests, blood draws, and/or other measures.
12 Years and Older
Not specified
40 - 90%
10
64 weeks
Restore CFTR FunctionRecruiting Location: Multiple US locations & Australia
A Phase 3, Randomized, Double-blind, Controlled Study Evaluating the Efficacy and Safety of VX-121 Combination Therapy in Subjects With Cystic Fibrosis (CF) Who Are Heterozygous for F508del and a Minimal Function Mutation (F/MF) , protocol number Vertex VX-21-121-102 NCT05033080
This study will look at the safety and effectiveness of VX-121/tezacaftor/deutivacaftor, a drug combination intended to help CFTR protein function closer to normal.
One Copy F508del
19
Anti-InfectiveEnrolling Location: Not specified
Study to evaluate nebulized BX004-A in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (BiomX Phase 1b/2a) (BiomX BMX-04-001 Part 1) , protocol number NCT05010577
This study is testing the safety and tolerability of nebulized BX004-A, a bacteriophage drug intended to treat infections in the lung. Bacteriophages are specialized viruses that kill very specific bacterial strains. Multiple doses of the drug will be tested in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (PsA) to find the best dose.
40% or greater
6
192 days
Study to evaluate nebulized BX004-A in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (BiomX Phase 1b/2a) (BiomX BMX-04-001 Part 2) , protocol number NCT05010577
7
189 days
BehavioralRecruiting Location: Hobart, Tasmania
Impact of Beam Feel Good Website for individuals with cystic fibrosis (CF) , protocol number ACTRN12621000725864
Cystic Fibrosis (CF) is a chronic, life limiting condition, diagnosed usually at birth and is an autosomal recessive disease. Recent studies have indicated many adults with CF have strong beliefs that exercise may be equal or superior to other traditional forms of airway clearance as the mainstay for treatment. A lack of exercise in a daily regimen for an individual with CF has been associated with increased hospitalisations, poorer health outcomes including decline in lung function and decreased quality of life.
16 Years to 65 Years
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US
Study to evaluate inhaled AR-501 in healthy adults and adults with cystic fibrosis and Pseudomonas aeruginosa (Aridis AR-501-001 MAD cohorts) , protocol number (Aridis AR-501-001 MAD cohorts) NCT03669614
This study is testing inhaled AR-501, a drug intended to treat infections in the lung. The study will measure the drug’s safety, how well it works, and how the body processes it. Multiple doses of AR-501 will be tested in both healthy adults and adults with cystic fibrosis who are infected with Pseudomonas aeruginosa to find the best dose.
45% or greater
11
6 Weeks
ObservationalRecruiting Location: Australia
BEAT CF platform: A digital infrastructure and data collection tool to evaluate treatments for pulmonary exacerbations in children and adults with Cystic Fibrosis. , protocol number ACTRN12621000638831
With every respiratory exacerbation of CF, approximately 25% of patients do not return to their baseline lung function. Preservation of lung function is important for extending life and for quality of life, thus there is a need to determine the most effective empirical treatments of exacerbations. Antibiotics are a cornerstone of treatment. Most antibiotic regimens are only informed by old, underpowered, or poor-quality trials. Across Australia, CF centres use a range of approaches and antibiotic regimens. No consensus exists on the treatment of pulmonary exacerbations of CF. In addition to numerous antibiotic options, there are other unanswered questions pertaining to the use of mucolytic agents, anti-inflammatory medication and chest physiotherapy, alone and in combination. The range of regimens used for treating CF exacerbations cannot be feasibly compared using conventional clinical trials (comparing one treatment at a time to another treatment or placebo) due to the large number of comparisons that are needed. The aim of BEAT CF is to optimise the management of lung exacerbations in people with CF by systematically evaluating the effectiveness of alternative treatment options, and by implementing these findings in routine care on an ongoing basis. The initial, platform phase of BEAT CF involves the platform database. The platform collects treatment and outcome data in an efficient way from the medical records of participants, for the purpose of evaluating the comparative effectiveness of alternative treatments. The BEAT CF platform is intended to support the data capture for future, nested clinical trials. Details of any future clinical trials will be available separately as and when they are written.
No Limit
ObservationalEnrolling Location: Multiple US locations
MAYFLOWERS: Study of pregnancy in women with cystic fibrosis (MAYFLOWERS-OB-20) , protocol number MAYFLOWERS-OB-20 NCT04828382
This observational study will evaluate the effects of CFTR modulators on women with CF during and after pregnancy. CFTR modulators are intended to help CFTR protein function closer to normal.
16 Years and Older
No Mutation requirement
No FEV1 limit
9
35 months