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.
OtherEnrolling Location: NSW - Australia
An observational study investigating the interactions between lung disease, nocturnal sleep disordered breathing and daytime function assessed by overnight polysomnography, 24 cough recordings and Sonomet measurements in addition to investing if the sleep disordered breathing abnormalities and predicators of a pulmonary exacerbation in adults with cystic fibrosis. , protocol number ACTRN12613000292774
To determine the interactions between lung disease, nocturnal sleep disordered breathing and daytime functioning in patients with cystic fibrosis. Overnight polysomnography will be compared with cough recordings and Sonomat recordings to evaluate sleep disruptions including cough, grunting, snores, shallow breathing and respiratory related arousals in cystic fibrosis patients. In addition, the study will evaluate if the sleep abnormalities, measured non-invasively, can predict the onset of a pulmonary exacerbation in a cystic fibrosis patient.
Age:
17 Years to 70 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
Probiotics and the Early Life effects on intestinal bacteria and inflammation in children with Cystic Fibrosis (PEARL-CF) , protocol number ACTRN12616000797471
The PEARL-CF STUDY randomised, controlled trial of probiotic supplementation given once daily for one year in children with CF (age 0-6 years). Randomization will occur among CF subjects and performed as block randomization with a 1;1 allocation Stools will be collected and analysed over a two year period. The hypothesis is probiotics restores the abnormal gut microbiota in children with CF, which in turn reduces the risk of developing intestinal inflammation. We also hypothesise that when probiotics are given in early life, the effects of probiotics, even when ceased, are sustained compared to when probiotics are given after the gut microbiota has become establised (-3 year old).
0 to 6 Years
In adults with cystic fibrosis, what is the effect of a smartphone application used to report symptoms versus usual care on exacerbations requiring intravenous antibiotics, healthcare utilisation, lung function, quality of life, anxiety and depression, nutritional status, medication adherence and absenteeism and presenteeism. , protocol number ACTRN12615000599572
Cystic fibrosis (CF) is the most common Caucasian genetic disease and has a reduced life expectancy of approximately 40 years of age. The decline in lung function in CF is accelerated by exacerbations. Severe exacerbations require treatment with intravenous antibiotics (IVABs), but of concern many do not regain the lung function they have lost following treatment. One of the major factors in this failure to regain lung function is the delay in time it takes for the individual with CF to present to the CF centre to report symptoms and commence treatment.
18 Years and Over
Does the bubble-positive expiratory pressure (PEP) device improve secretion clearance compared to the active cycle of breathing technique (ACBT) or no intervention (control) in people with non-cystic fibrosis bronchiectasis? , protocol number ACTRN12614001233617
The primary aid of this study is to determine the effectiveness of the bubble-PEP device compared to the active cycle of breathing technique (ACBT) or no intervention in clearing secretions in people with non-CF bronchiectasis. The hypothesis is that the bubblePEP is not inferior to the ACBT and is superior to no intervention in clearing secretions. Secondary aims will be to evaluate the acceptability and perceived benefits of the bubblePEP device by participants.
18 Years
The effect of low glucose load diet on glycaemic control in patients with cystic fibrosis , protocol number ACTRN12616001159448p
Concentrated carbonohydrate loads are often used in CF to help meet increased energy requirements and could have a role in the poor glycaemic control observed in CF. The aim of this project is therefore to establish the feasibility of implementing a low glycaemic load, high calorie dietary management plan for patients with CF and impaired glycaemic status (IGT). A secondary aim is to assess the effect of a low GL diet on clinical outcomes of glycaemic control, lung function and weight. Patients with IGT at the RPA CF clinic will be eligible to participate in this study. Weight glycaemic control, Lung function, diet history and quality of life will be measured at baseline and also at 3 months, following dietary intervention of a low GL diet.
18 to 45 Years
The use of exenatide, a GLP-1 agonist, in young people with cystic fibrosis related diabetes and impaired glucose tolerance in the management of post prandial glycaemia, gastric emptying and incretins. , protocol number ACTRN12615001029583
Aim to evaluate the effect of exenatide on postprandial glycaemia in patients with cystic fibrosis related diabetes (CFRD) and impaired glucose tolerance (IGT). CFRD has a detrimental impact on pulmonary function, mortality and prognosis after lung transplant, that is currently treated by intensive insulin regimen, GLP-1 is released in response to food ingestion and is known to stimulate insulin secretion, suppress glucagon secretion and slow gastric emptying. Exenatide is a GLP-1 (glucagon-like peptide1) agonist that can be administered daily without significant risk of hypoglycaemia. It is anticipated that exenatide will normalise postprandial glycaemia. This is a double blinded crossover trail where participants will have 2 study days. On the first day they will receive the intervention or placebo, receiving the opposite on the second day. Once the intervention or placebo has been given, the participant will consume a pancake followed by assessment of glycaemia, incretin response and gastric emptying.
10 to 25 Years old
Neurocognitive function, sleep and well-being in patients with Cystic Fibrosis with mild lung disease , protocol number ACTRN12616000454471
This will be an observational study in CF patients with mild lung disease, examining the relationship between neurocognitive function and sleep parameters. Additional factors to be studied include hypoxemia, inflammatory markers, circadian rhythm and mood. CF participants will be tested at baseline, during and after lung exacerbation. Age and education matched non-CF controls will be invited to participate as well. Summary of tests to be performed at each visit. 1. Sleep study with high density EEG 2. Blood tests 3. Activity and oxygen monitoring with watches 4. Neurocognitive tests and Questionnaires.
18 to 75 Years
Excercise alone versus exercise and positive expiratory pressure as a form of airway secretion clearance in adults with mild cystic fibrosis-related respiratory disease - a feasibility study. , protocol number ACTRN12615001361594
Participants will do four weeks of 'usual' care involving daily breathing exercises (PEP) and walking, running or step ups. After 4 weeks, those who have adhered to these requirements will be randomly allocated to either continue this routine or to stop the PEP and to just continue with the walking, running or step ups for 3 months. Participants will be assessed before and after the four weeks of usual care and at the end of the three month intervention phase.
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US & Australia
A Phase 2 Study to evaluate efficacy and safety of VX-561 in adults 18 years and older with cystic fibrosis , protocol number NCT03911713 VERTEX VX-561-101
This study will look at the safety and effectiveness of the drug VX-561, a drug intended to help CFTR function closer to normal. This study is randomized and placebo-controlled. This means that some participants will receive one of four dose levels of the study drug, some participants will receive ivacaftor, and some participants will receive placebo. In this study, researchers will test the effectiveness of VX-561 by monitoring lung function. They will also monitor sweat chloride and adverse events. This study may require lung function tests, blood samples, and/or other measures.
18 years and Older
One Copy F508del or No Copies F508del
40 to 100%
8
16 weeks
Restore CFTR FunctionEnrolling Location: Australia
A Study to Evaluate the Effect of VX-661 in Combination With Ivacaftor on Chest Imaging Endpoints in Subjects With Cystic Fibrosis, Homozygous for the F508del CFTR Mutation , protocol number NCT02730208 VX15-661-112
A Phase 2, Randomized, Placebo-Controlled, Double-blind Study to Evaluate the Effect of VX-661 in Combination With Ivacaftor on Chest Imaging Endpoints in Subjects Aged 12 Years and Older With Cystic Fibrosis, Homozygous for the F508del CFTR Mutation
>12 years
Homozygous for the F508del CFTR mutation
ppFEV1 ≥70% of predicted normal
Not Specified