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: Australia
Children and adolescents with cystic fibrosis attending the Women's and Children's Hospital Ambulatory Cystic Fibrosis Physiotherapy Clinic - effect on quality of life, number of occupied bed days, pulmonary function and exercise capacity. , protocol number ACTRN12611000160932
To determine the effect of participation in the Ambulatory CF Physiotherapy on patients quality of life, lung function, fitness and number of days in hospital.
Age:
0 to 18 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
0
Length of Participation:
OtherEnrolling Location: NSW - Australia
Randomised trial of the effect of nebulised hypertonic saline in relation to airways clearance physiotherapy, on subjective efficacy, tolerability and overall satisfaction, and lung function parameters in adults with cystic fibrosis lung disease. , protocol number ACTRN12611000673943
Research question: To determine whether the timing of HS inhalation (before, during or after airway clearance physiotherapy) impacts the subjective efficacy, tolerability and overall satisfaction, of lung function parameters in adults with cystic fibrosis.
18 Years and Older
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.
Vaccine compared to quadrivalent (ACYW135) meningococcal conjuate vaccine in reducing respiratory exacerbations in children aged greater then or equal to 18 months with suppurative lung disease. , protocol number ACTRN12612000034831
Chronic suppurative lung diseases in children are major causes of morbidity and mortality worldwide, particularly in disadvantaged populations. Repeated infections in childhood contribute to poor lung health in adulthood. The most common organism associated with infection is non-typeable Haemophilus influenzae (NTHi). This study aims to determine whether a vaccine against NTHi (10v-PHiD) can reduce repeated respiratory infections in children. We will be comparing the number of respiratory exacerbation's in the 12 months following vaccinated children with chronic lung disease vaccinated with 10vPHiD and children who received a meningococcal vaccine (control vaccine).
18 Months to 15 Years
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
Physiotherapy Services for Cystic Fibrosis (CF) Patients Receiving Home Intravenous Antibiotics: Australian Practice , protocol number ACTRN12612001295831
A 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
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
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.
17 Years to 70 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.
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