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 47 to 55 years by 2026.
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.
OtherClosed to enrollment Location: Australia
Clinical and psychosocial changes over late childhood and adolescence and early life determinants of long term clinical outcomes in cystic fibrosis Study , protocol number ACTRN12613000778785
The purpose of the study is to further improve outcomes in CF by developing a better understanding of the reasons for the decline in health status and lung function during adolescence, which is one of the key challenges facing clinicians. We hope to do this by looking at such things such as the 1) pathology involved in CF lung disease, 2) long term risk of emerging organisms, 3) potential effects of early therapeutic interventions, such as P. aeruginosa eradication, 4) metagenomic profile identifying bacteria in respiratory samples, 5) psychosocial factors, and 6) relationship between early life events and outcomes between 9-17 years of age.
Age:
9 - 15 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
Length of Participation:
OtherRecruiting Location: Australia - NSW, QLD, SA, VIC, WA
CF-IDEA (Cystic Fibrosis - Insulin Deficiency, Early Action): randomised controlled trial of once-daily insulin determir inpatients with cystic fibrosis and early insulin deficiency , protocol number ACTRN12611000068965
Cystic fibrosis (CF) is the most common life-threatening genetic condition affecting Australian children. As well as repeated lung infections, children with CF develop insulin deficiency and eventually diabetes. The CF-IDEA trial will determine whether starting insulin treatment before the onset of diabetes (earlier than current practice) will improve the health of children with CF by improving body weight and lung function.
5 - 19 Years
OtherEnrolling Location: NSW - Australia
A Phase 3 multi-centre randomised placebo-controlled study of azithromycin in the primary prevention of radiologically-defined bronchiectasis in infants with cystic fibrosis (COMBATCF). , protocol number NCT01270074 ACTRN12610001072000
The general aim of this project is to conduct a randomized double-blind, placebo-controlled clinical trial of azithromycin to determine whether treatment from infancy is safe and will prevent the onset of bronchiectasis. One hundred and thirty infants will be recruited from CF clinics in Australia and New Zealand and treated from 3 months to three years of age. The primary outcome will be the proportion with radiologically-defined bronchiectasis at 3 years of age. Safety and mechanistic evaluations will also be undertaken.
6 Weeks to 6 Months
Randomised controlled trial to be determine whether once-daily insulin detemir slows decline in weight and lung functions in patients with cystic fibrosis and early insulin deficiency. , protocol number NCT01100892 ACTRN13611000068965
Cystic fibrosis (CF) is the most common life-threatening genetic condition affecting Australian children. As well as repeated lung infections, children with CF develop insulin deficiency and eventually diabetes. The CF-IDEA trial (Cystic Fibrosis - Insulin Deficiency, Early Action) will determine whether starting insulin treatment before the onset of diabetes (earlier than current practice) will improve the health of children with CF by improving body weight and lung function.
5 Years to 19 Years
0
Anti-InfectiveActive, not recruiting Location: Australia
A randomised, prospective, double-blind trial of long-term daily versus weekly azithromycin to determine the effect of dose on disease parameters in cystic fibrosis. , protocol number ACTRN12605000162617
A randomised, prospective, double-blind trial of long-term daily versus weekly azithromycin to determine the effect of dose on disease parameters in cystic fibrosis.
> 6 years
with 10% of average for last 6 months
Not Specified
Anti-InfectiveEnrolling Location: Australia
Fungal exposure and fungal-specific IgE in subjects with cystic fibrosis (Australian Cystic Fibrosis Research Trust 2004/052) , protocol number ACTRN12605000156684
Fungal exposure and fungal-specific IgE in subjects with cystic fibrosis (Australian Cystic Fibrosis Research Trust 2004/052)
Nutritional-GIActive, not recruiting Location: Australia
Prevalence and predictors of malnutrition and decreased bone density in cystic fibrosis. , protocol number ACTRN12605000426684
Prevalence and predictors of malnutrition and decreased bone density in cystic fibrosis.
>18 years
Nutritional-GIRecruiting Location: Australia
Gastric emptying and malnutrition in adults with cystic fibrosis. , protocol number ACTRN12605000427673
Gastric emptying and malnutrition in adults with cystic fibrosis.
OtherEnrolling Location: Australia
Effect of Positive Expiratory Pressure (PEP) on the duration of the exacerbation-free period in people with cystic fibrosis (CF). , protocol number ACTRN12605000348651
Effect of Positive Expiratory Pressure (PEP) on the duration of the exacerbation-free period in people with cystic fibrosis (CF).
FEV1 within 15% of their best recorded value as an outpatient for the preceding six months
OtherNot yet recruiting Location: Australia
Phase 3, placebo-controlled, parallel group randomised trial of the effect of nebulised hypertonic saline on the length of stay of people hospitalised with acute exacerbations of cystic fibrosis lung disease. , protocol number ACTRN12605000780651
Phase 3, placebo-controlled, parallel group randomised trial of the effect of nebulised hypertonic saline on the length of stay of people hospitalised with acute exacerbations of cystic fibrosis lung disease.
>17 years