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.
BehavioralEnrolling Location: Australia
Engaging and re-connecting 'at-risk' children with chronic respiratory illness. , protocol number ACTRN12607000515493
Children with chronic illness sometimes feel disconnected and lonely. In this study we will evaluate the use of a psycho-social intervention program for 'at-risk' children (ie. child with chronic illness, low socio-economic groups) to improve their sense of well-being, adherence to therapies and health outcomes.
Age:
10-15 years
Mutation(s):
Not specified
FEV1% Predicted:
Not Specified
Number of Visits:
Length of Participation:
BehavioralNot yet recruiting Location: Australia
Stretching in cystic fibrosis: does it improve the quality of life and measures of kung function. , protocol number ACTRN12608000484347
Stretching in cystic fibrosis: does it improve the quality of life and measures of kung function.
18-70 years
>40% or above
Anti-InfectiveEnrolling Location: Australia
A comparative assessment of the clinical impact , protocol number ACTRN12607000349448
This study is designed to provide vitally needed information on the clinical implications of being infected by a clonal strain of P. aeruginosa and the risk factors for the acquisition of a clonal strain. This new information will provide a rational basis for the need for changes to infection control policies and better outcome predictors for patients infected with clonal strains of P. aeruginosa.
2-75 years
OtherRecruiting Location: Australia
Continuous infusion antipseudomonal beta-lactams versus standard short infusions in the treatment of acute infective exacerbations in patients with cystic fibrosis - impact on clinical and microbiological outcomes. , protocol number NCT01667094 ACTRN12612000945820
Cystic fibrosis (CF) is an inherited disorder which results in increased thickness of secretions, especially in the lungs. By adulthood, the majority of patients with CF will have bacteria living in their lungs, called Pseudomonas which can cause lung infections. This usually results in worsening respiratory symptoms and often an acute deterioration in their lung function. They are usually treated with antibiotics that target the Pseudomonas aeruginosa. These antibiotics are typically given as short intravenous infusions several times a day. This study aims to compare the standard method of giving these antibiotics with a different strategy of giving these antibiotics to see if this can improve the outcomes of treatment of these infections and reduce the amount of Pseudomonas aeruginosa in the lungs of these patients. This strategy consists of giving the same antibiotics continuously, to ensure there is always enough antibiotic in the bloodstream and the lung to be able to kill the bacteria.
18 Years and Older
0
OtherEnrolling Location: Australia
Does vibration training improve muscle power, bone strength and physical function in children and adolescents with cystic fibrosis. , protocol number ACTRN12609000520235
A study to examine th effects of home based whole body vibration training on increasing muscle in children 6-18 years.
6 - 18 years
> 25%
Restore CFTR FunctionClosed to enrollment Location: Australia
An open-label, rollover study to evaluate the long term safety and efficacy of VX-770 in subjects with Cystic Fibrosis , protocol number VX08-770-105 PERSIST ACTRN12610000491066
Study 105 (VX08-770-105) is an open-label, VX-770 treatment extension of Study VX08-770-102 (Study 102) and Study VX08-770-103 (Study 103). This rollover study evaluates the long-term safety and efficacy of treatment with the experimental drug, VX-770, for a duration of up to 96 weeks. Male and female subjects 6 years and older with cystic fibrosis who have completed Study 102 or 103 without major protocol violations are eligible to enrol. This project is an international, multi-centre trial, with subjects from 70 sites worldwide including Australia, Europe and North America. [Study 102: NCT00909532] [Study 103: NCT00909727]
> 6 years
up to 96 weeks
Effect of nebulised saline on lung function and quality of life in patients with CF. , protocol number ACTRN12610000754044
This study will compare 1. compare different concentrations of hypertonic saline delivered via a new fast nebuliser 2. determine whether hypertonic saline is tolerable when delivered via a new fast nebuliser 3. Compare the response to hypertonic saline of patients with badly affected lungs to those patients with mild-moderately affected lungs.
OtherNot yet recruiting Location: NSW - Australia
Randomised trial of positive expiratory pressure (PEP) to improve deposition in participants with CF. , protocol number ACTRN12612000017820
Study aims to determine whether the addition of PEP improves the uniformity of deposition of inhaled aerosol in CF patients. Deposition scan following radioaerosol inhalation with and without PEP will be analysed and compared to data from healthy participants.
>18 years
Nutritional-GINot yet recruiting Location: QLD Australia
The effect of withdrawal of oral iron supplementation on airway microbiology and outcomes in cystic fibrosis. , protocol number ACTRN12612000146897
An open-label study to examine the effects of withdrawal of oral iron supplements on airway iron content and microbiology in patients with CF.
18 -70 Years
OtherEnrolling Location: NSW AUSTRALIA
Prevalence of hypoglycaemia and the role of incretins and glucagon during extended oral glucose tolerance test in people with Cystic Fibrosis. , protocol number ACTRN12616001175460
This study aims to identify the prevalence of hypoglycaemia during extended OGTT's and associations with biochemical parameters relevant to glucose metabolism. In particular, this study will explore the role of glucagon and the incretions GLP-1 and GIP in reactive hypoglycaemia during OGT's.
18-45 Years