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.
ObservationalCompleted with results Location: USA
GOAL e2 Lung Clearance Index study in children who have a CFTR gating mutation , protocol number NCT01521338 GOAL-OB-11 Cohort 4
This study evaluated lung function in young children with CF before and after taking ivacaftor. This study was for children ages 3 to 5 years old who have at least one CFTR gating mutation.
Age:
3 Years to 5 Years
Mutation(s):
One Copy F508del or No Copies F508del
FEV1% Predicted:
No FEV1 Limit
Number of Visits:
5
Length of Participation:
6 months
ObservationalClosed to enrollment Location: USA
GOAL-e2 Expansion Study , protocol number GOAL-OB-11 Expansion
This is a prospective, multi-centre observational study. This study will look at samples from people with cystic fibrosis who have the R117H and other non-G551D gating CFTR mutations, many of whom are expected to be prescribed ivacaftor during the course of the study. This study is for ages 6 and above.
6 Years and Older
One Copy F508del of No Copies F506del
Anti-InfectiveCompleted with results Location: USA
PALS: Aztreonam Inhalation Solution (AZLI) Safety Study in Children with CF and Chronic Pseudomonas Aeruginosa , protocol number Gilead GS_US_205-0160
This open-label study looked at the safety of Aztreonam Inhalation Solution (Cayston®) given three times daily for three 28-day on/28-day off cycles in children with cystic fibrosis and chronic Pseudomonas aueruginosa (PA) infection in the lower airways.
Less than 12 Years
No Mutation Requirement
8
Phase 4 study to monitor the susceptibility of Pseudomonas aeruginosa to aztreonam in people with CF , protocol number Gilead GS-US-205-0128
This 5-year study took place at multiple care centres across the US. It investigated the susceptibility of Pseudomonas aeruginosa isolates to the anti-infective drug aztreonam.
1 Year and Older
Less than 90%
5 years
Anti-InflammatoryClosed to enrollment Location: USA
Phase 2 study of GS-5745 in adults with CF , protocol number Gilead GS-US-404-1808
This study is taking place at multiple care centers across the U.S. It will look at the effectiveness of the anti-inflammatory drug GS-5745 and will use a placebo control.
18 Years and Older
No Mutation Requirements
40 to 80%
6
24 weeks
Anti-InflammatoryCompleted with results Location: USA
Phase 2 study of JBT-101 in people with CF , protocol number Corbus JBT101-CF-001 NCT02465450
This study evaluated the safety and effectiveness of the anti-inflammatory drug JBT-101 (lenabasum), as well as how the body processes the drug, in adults with CF.
18 - 65 years
No mutation requirement
40% or greater
127 days
Porcine viral antibody point prevalence study in people with CF taking pancreatic enzymes , protocol number AbbieVie JSPP-12-01
This study is taking place at multiple care centre across the US. It will look at the prevalence of antibodies to hepatitis E virus (HEV) and other selected porcine viruses in people with cystic fibrosis who are receiving pancreatic enzyme replacement therapy (PERT).
2 Years and Older
1
1 day
KB001-A in people with CF and Pseudomonas aeruginosa , protocol number KaloBios KB001-05
This study took place at multiple care centres across the U.S. It looked to see whether the use of KB001A in people with CF who have Pseudomonas aeruginosa delays the need for antibiotic drugs.
12-50 Years
40-100%
10
20 weeks
Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis , protocol number NARKEW07A0
This study will look at whether using abdominal ultrasounds predicts the progression of liver disease in children with CF.
3 Years to 12 Years
Genetic Modifiers of Cystic Fibrosis: Sibling Study , protocol number NCT00037778
The purpose of the study was to find genetic and environmental factors effecting the variability in nutritional outcomes seen in people with CF.
No age limit
0