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
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.
Age:
18 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
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
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
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
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
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.
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
ObservationalEnrolling Location: Multiple care centres across the US
GI symptoms observational study (GALAXY) , protocol number NCT03801993 GALAXY-OB-18
This study will collect information on gastrointestinal (GI) symptoms that people with CF experience.
2 years and older
No mutation requirement
No FEV1 limit
1
29 days
OtherEnrolling Location: USA
Study of SPI-1005 in people with CF ages 18 and older (Sound Pharma SPI-3005-501.2) , protocol number NCT02819856 SPI-3005-501.2
This study will test the safety and tolerability of SPI-1005, a drug intended to prevent and treat hearing loss caused by aminoglycosides.
18 years and older
40-100%
6
49 days
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US
Phase 3 study of lumacaftor/ivacaftor (Orkambi®) in babies with two copies of the F508del CFTR mutation , protocol number NCT03601637 VX16-809-122
This study is taking place at multiple care centers across the U.S. It will evaluate the safety of the drug lumacaftor/ivacaftor (Orkambi®) and its effect on the body. It is for babies ages 1 to less than 2 years old who have cystic fibrosis and two copies of the F508del CFTR mutation.
1-2 years
Two copies of F508del
11
38