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
The effect of azithromycin and hypertonic saline on quality of life, lung function and exercise capacity in adults with non-cystic fibrosis bronchiectasis. , protocol number ACTRN12611001199909
The purpose of this study is to access the efficacy of an oral antibiotic (Azithromycin) and an inhaled mucus-clearance agent (nebulised salt water known as hypertonic saline) in people with bronchiectasis that is not due to cystic fibrosis. The interventions will be administered over a 6 month period. The investigators hypothesise that each intervention will improve the quality of the people with bronchiectasis by reducing the severity of the chronic lung infection.
Age:
18 Years and Older
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
OtherEnrolling Location: NSW, QLD, SA & VIC - Australia
A randomised controlled trial of effects of early life exposure to general anaesthesia on neurobehavioural outcomes in children with cystic fibrosis (CF) , protocol number ACTRN12613000057785
The use of general anaesthesia (GA) in infants and young children has generally been considered safe. Recent research from laboratory animal studies has raised concerns that exposure to anaesthetic medicines in early life could potentially be related to impaired memory, learning and behaviour. This study takes advantage of the previous randomisation in the ACFBAL study (ACTRN 12605000665639)
9 Years to 15 Years
OtherRecruiting Location: NSW - Australia
Physiotherapy Services for Cystic Fibrosis (CF) Patients Receiving Home Intravenous Antibiotics: Australian Practice , protocol number ACTRN12612001295831
An email questionnaire will be distributed to the principal physiotherapist working in the Cystic Fibrosis service at each site contributing to the Australian Cystic Fibrosis Data Registry in 2010. The questionnaire investigates the current level of physiotherapy provided to patients with cystic fibrosis receiving home intravenous antibiotics. It covers location and type of service provided, frequency and what the current model of care is based on.
0 No Age Limit
A double blind, placebo-controlled, randomised study of inhaled mannitol during acute pulmonary exacerbation in children with cystic fibrosis - a pilot study. , protocol number ACTRN12612001167853
To see if the addition of dry powder mannitol as an extra therapy during hospitalisation for an acute pulmonary exacerbation in young people with Cystic Fibrosis improves outcomes from that admission. Our hypothesis is that will improve not only clinical status at the time of discharge but also measures of lung function.
6 Years to 18 Years
An observational study of oral glucose tolerance testing results in subject with cystic fibrosis. , protocol number ACTRN12614000064606
Assessment of the prevalence and incidence of glucose intolerance and diabetes in subjects with cystic fibrosis.
17 Years to 70 Years
The effect of ivacaftor (VX-770, registered in Australia as Kalydeco) on exocrine pancreatic function in patients 6 years and older with cystic fibrosis and at least one of the G551D CFTR mutations and who are naive for ivacaftor. , protocol number ACTRN12614000356662
Examine the effect of twice daily administration of 150mg ivacaftor on exocrine pancreatic function of patients with cystic fibrosis and at least one copy of the G551D CFTR mutation.
6 Years to 65 Years
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.
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