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.
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.
Number of Visits:
Length of Participation:
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
Location: Indiana, USA
This is a real-world observational study to assess the impact of Trikafta therapy on the daily use of chronic CF medications and treatments in PwCF using a novel phone-based, patient-reported outcomes application (Folia Health) and data from the CF Foundation Patient Registry.
, protocol number HERO-2 (HERO2-OB-2) NCT04798014
The study will determine the proportion and clinical features of PwCF taking Trikafta who make changes to their chronic daily therapies and assess the relationship between changes in chronic daily therapies in PwCF taking Trikafta using data from the CF Registry. Trikafta and other medications will not be prescribed as part of the study. Participants may be enrolled at participating sites, through social media recruitment, or from existing users of Folia Health. Participation in the study will occur through the Folia application, which is accessed through iPhones, Android phones, and desktop computers. Study participants will be asked to complete an initial survey, log into the app to provide daily data on symptoms and medication use, and complete monthly surveys regarding their symptoms and medication use for 12 months using Folia. Participants are encouraged to track daily, but can “batch track” and provide 7 days of data at once (compensation is based on a minimum of three days of data each week).
12 Years and Older
No Mutation Requirement
No FEV1 Limit
Location: Multiple care centres across the US
STOP-PEDS Pilot: Study to evaluate treatment of pulmonary exacerbations in children 6-18 years old with CF (STOP-PEDS 2.0)
, protocol number STOP-PEDS 2.0 NCT04608019
This study will evaluate children 6 to 18 years old with CF to determine the acceptability and feasibility of a larger trial comparing immediate antibiotics versus tailored therapy for pulmonary exacerbation treatment.
6 Years to 18 Years
50% or greater
Restore CFTR FunctionRecruiting
A study evaluating the long-term safety and efficacy of elexacaftor/tezacaftor/ivacaftor in cystic fibrosis patients 6 years and older and F/MF genotypes
, protocol number VX20-445-119 NCT04545515
A Phase 3b Open-label Study Evaluating the Long-term Safety and Efficacy of Elexacaftor/Tezacaftor/Ivacaftor Combination Therapy in Cystic Fibrosis Subjects Ages 6 Years and Older Who Are Heterozygous for the F508del Mutation and a Minimal Function Mutation (F/MF)
Minimum 6 Years
A Study to assess the effect of ELX/TEZ/IVA on glucose tolerance in participants with cystic fibrosis
, protocol number VX19-445-117 NCT04599465
A Phase 3b Open-label Study to Assess the Effect of Elexacaftor/Tezacaftor/Ivacaftor on Glucose Tolerance in Cystic Fibrosis Subjects With Abnormal Glucose Metabolism
Minimum age 12 Years
Location: Western Australia
MRI for investigating airway clearance techniques in adults with cystic fibrosis
, protocol number ACTRN12620001159943
We aim to investigate new techniques in magnetic resonance imaging (MRI) pre and post airway clearance techniques (ACT). Adults with CF will be invited to participate, and to perform their usual ACT (i.e. breathing exercises to clear mucus from their airways) within the MRI under the guidance of an experienced physiotherapist. This will allow for innovative cutting edge imaging to be performed before and after the ACT are performed, to provide information on airway structure and function; specifically in regard to the movement of mucous (sputum) and trapped air, and well as dynamic function of the larger airways.
18 Years and Older
Measuring antibiotic levels in people with cystic fibrosis taking treatment for mycobacterial lung infection.
, protocol number ACTRN12619000948190
We will test the blood levels of important drugs given to patients with CF with NTM infection and compare to the drug levels in people without cystic fibrosis published in other studies. In this way we can help determine whether the doses we are using are correct or need to be changed. If the doses of antibiotics being used in CF are too low this could lead to new dosing regimens being used in future drug trials.
Restore CFTR FunctionEnrolling
Location: Multiple care centres across the US
Study of the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor, in children 2-5 years old with cystic fibrosis (Part A)
, protocol number (Vertex VX20-445-111 Part A) NCT04537793
This study will look at the safety and effectiveness of the triple-combination therapy, elexacaftor/tezacaftor/ivacaftor (Trikafta®), in children ages 2-5 years old with CF. These drugs are intended to help CFTR protein function closer to normal.
2 Years to 5 Years
Two Copies F508del or One Copy F508del
Restore CFTR FunctionEnrolling
Location: California, USA
Study of the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor, in children 2-5 years old with cystic fibrosis (Part B)
, protocol number VX20-445-111 PART B NCT04537793