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.
ObservationalRecruiting Location: Australia - NSW, QLD, SA, WA, VIC
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.
Age:
No limit
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
Length of Participation:
OtherRecruiting Location: Australia - NSW, QLD, SA, WA, VIC
BEAT CF: Pulmonary Exacerbations Treatment Platform - Backbone Antibiotics Domain , protocol number ACTRN12622000950763
An evaluation of the comparative effectiveness of prescribing various standard of care, first-line Backbone Antibiotics in the management of pulmonary exacerbations requiring intensive therapy (PERIT) in children and adults with CF, with respect to their short-term improvement in lung function.
Minimum Age 5 Years
OtherRecruiting Location: Australia - NSW, QLD, SA, WA,VIC
BEAT CF: Pulmonary Exacerbations Treatment Platform - Adjunct Antibiotics Domain , protocol number ACTRN12622001063707
An evaluation of the comparative effectiveness of prescribing various standard of care, adjunct Antibiotics in the management of pulmonary exacerbations requiring intensive therapy (PERIT) in children and adults with CF, with respect to their short-term improvement in lung function.
Anti-InfectiveEnrolling Location: Multiple US Locations
Study of ARV-1801 (ACG-701) for the treatment of pulmonary exacerbations in CF patients 12 years of age or older. (Aceragen ARV-1801 ) , protocol number NCT05641298
This study will evaluate the efficacy and safety of the study drug ARV-1801, an oral drug intended to treat infections in the lung. The study also will evaluate how the body processes the drug.
12 Years and Older
No Mutation Requirement
No FEV1 Limit
5
28 Days
Restore CFTR FunctionEnrolling Location: Multiple US Locations
Study to evaluate VX-522 in adults 18 years and older with cystic fibrosis. (Vertex VX21-522-001 SAD) , protocol number NCT05668741
This study will evaluate the safety and tolerability of VX-522, an investigational gene therapy, in adults with CF whose mutations are not responsive to CFTR modulator therapy.
18 to 65 Years Old
No Copies F508del
40% or greater
8
Six months
OtherRecruiting Location: Western Australia
Immediate effects of the MetaNeb® compared to huff and cough in adults with stable cystic fibrosis , protocol number ACTRN12621000855820
This project will look at the effects effect of a single 30-minute session using the MetaNeb® device versus a single session of directed huff and cough (control) on the primary outcome of lung structure, regional perfusion and ventilation and secondary outcomes of respiratory mechanics, airflow obstruction, sputum expectoration and symptoms related to CF in adults with stable CF. Our hypothesis is, in this population, a single MetaNeb® treatment, will be more effective in changing and/or improving these primary and secondary outcomes than huff and cough alone.
18 Years and Older
Restore CFTR FunctionRecruiting Location: NSW, Australia
A Phase I Study of Inhaled KB407, a Replication-Incompetent, Non-Integrating Vector Expressing Human Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), for the Treatment of Cystic Fibrosis , protocol number NCT05095246
The study will evaluate the safety and tolerability of nebulised KB-407. KB-407 is a viral vector that uses the abilitv of HSV-1 (herpes simplex virus) to deliver functional CFTR to the airways of people with cystic fibrosis. The viral vector does not cause disease since it has been modified by removing the genes responsible for replication. This study will enrol 4 participants into the first cohort. They will receive a single dose of KB407 and be followed for 60 days.
FEV1 =50% and =100%
Restore CFTR FunctionEnrolling Location: Multiple US locations
Study of galicaftor/navocaftor/ABBV-576 combination therapy in adults with cystic fibrosis who have at least one F508del mutation and are on stable elexacaftor/tezacaftor/ivacaftor (Trikafta) treatment (Abbvie M19-771) , protocol number ABBV-576 NCT04853368
This study will look at the safety and effectiveness of galicaftor/navocaftor/ABBV-576 combination therapy, a combination of CFTR modulators intended to help CFTR protein function closer to normal. This study is for adults with cystic fibrosis who have at least one F508del mutation.
Two Copies F508del or One Copy F508del
40 to 90%
6
3 months
Anti-InfectiveEnrolling Location: Multiple care centres across the US
Study to evaluate the standardizing of treatment for pulmonary exacerbations in children and adults with CF ages 6 and older. (STOP360-IP-22) , protocol number NCT05548283
This study will look at pulmonary exacerbations, which are a worsening of respiratory symptoms, in people with CF who need to be treated with intravenous (IV) antibiotics. It will compare treatment with one antibiotic (a beta-lactam) to treatment with two antibiotics (tobramycin and a beta-lactam) to learn whether there is a difference in lung function and symptom improvement between the two groups. This study is for people ages 6 and older.
6 Years and Older
82% or greater
3
48 days
ObservationalRecruiting Location: Western Australia
Family Surfing Activity for Children and adolescents with chronic conditions: Effects on Health and Well-being , protocol number ACTRN12622001168741
This study aims to evaluate the effects of a family-based surfing intervention on the physical and psychological wellbeing of children and adolescents with chronic conditions.
7-18 Years