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.
Restore CFTR FunctionEnrolling Location: Australia - QLD
A Study to Evaluate Safety, PK and PD of FDL169 in Cystic Fibrosis Subjects , protocol number NCT03093714 FDL169-2015-04
A Randomized, Double-Blind, Placebo-Controlled, Parallel Study to Evaluate Safety, Pharmacokinetics (PK) and Pharmacodynamics(PD) of FDL169 in Cystic Fibrosis (CF) Subjects Homozygous for the F508del-CFTR Mutation
Age:
18 Years to 85 Years
Mutation(s):
Homozygous for the F508del-CFTR mutation.
FEV1% Predicted:
(FEV1) >40% of predicted normal for age, sex and height.
Number of Visits:
Not specified
Length of Participation:
Not Specified
Restore CFTR FunctionEnrolling Location: Australia
Study of GLPG1837 in Subjects With Cystic Fibrosis (G551D Mutation) (SAPHIRA1) , protocol number NCT02707562
A Phase IIa, Open-label Study of Multiple Doses of GLPG1837 in Subjects With Cystic Fibrosis and the G551D Mutation
>18 years
G551D
Pre- or post-bronchodilator FEV1 ≥ 40% of predicted normal
Restore CFTR FunctionCompleted with results Location: Australia
A Study to Evaluate the Efficacy and Safety of Lumacaftor in Combination With Ivacaftor in Subjects With CF, Homozygous for the F508del-CFTR Mutation , protocol number NCT02514473 VX14-809-109
A Phase 3, Double Blind, Placebo Controlled, Parallel Group Study to Evaluate the Efficacy and Safety of Lumacaftor in Combination With Ivacaftor in Subjects Aged 6 Through 11 Years With Cystic Fibrosis, Homozygous for the F508del-CFTR Mutation
6-11 years
homozygous for the F508del CFTR mutation
ppFEV1 of ≥70 p
ObservationalEnrolling Location: Queensland University of Technology Contact: Jeremy Russell - phone:07 3069 7552 email: [email protected] To get started, go to: https://rebrand.ly/HYPRS-CF
Helping Young People Reduce the Stress of Cystic Fibrosis Study , protocol number The HYPRS-CF Study 1800000294 (UHREC Reference number)
Researchers at QUT are conducting a national, online research study with young people with Cystic Fibrosis (CF). The goal of this study is to learn how young people think and feel about the stress of CF and whether a social robot could possibly help them cope with this stress.
10-18 years
No mutation requirement
No FEV1 limit
1
Restore CFTR FunctionCompleted with results Location: Multiple care centres across the U.S.
Study of VX-445 triple combination in teens and adults with cystic fibrosis who have one copy of F508del and one copy of a gating or residual function mutation , protocol number VX18-445-104 NCT04058353
This study evaluated the safety and effectiveness of VX-445 (elexacaftor), tezacaftor, and ivacaftor in combination called TRIKAFTA®. This study was for people with CF 12 years and older with one copy of the F508del mutation and one copy of a gating or residual function mutation.
12 Years and older
One Copy F508del
40 to 90%
8
20 weeks
Mucociliary ClearanceCompleted with results Location: Multiple care centres across the US
Study of QBW276 in adults with CF , protocol number NCT92566044 NOVARTIS CQBW 276X2201
This study evaluated the safety and tolerability of QBW276, an inhaled drug designed to improve mucus clearance. This study also evaluated how the body processes the drug.
18 Years and Older
No Mutation Requirement
40 to 100%
6
14 days
Restore CFTR FunctionCompleted with results Location: Multiple care centres across the US
Roll-over study of ivacaftor in children with CF who have a CFTR gating mutation (Vertex VX-770-109) , protocol number NCT01946412 VERTEX VX-770-109
This study evaluated the long-term safety of ivacaftor (Kalydeco®) in children with CF. This study was for children who have a CFTR gating mutation and received at least one dose of ivacaftor in the VX11-770-108 study.
2 years to 5 years
One Copy F508del or No Copies F508del
No FEV1 Limit
7
88 weeks
Open-label study of ivacaftor in people with CF who have a non-G551D CFTR gating mutation (Vertex VX-770-112) , protocol number NCT01707290 VERTEX VX-770-112
This study evaluated the long-term safety of ivacaftor (Kelydeco®) in participants who have a non-G551D CFTR gating mutation. This study was for people who had participated in one of the VX11-770-110, VX12-770111 or VX12-770-113 studies.
6 Years and Older
2 years
Mucociliary ClearanceEnrolling Location: Florida, USA
Study of BI 1265162, a mucus clearance drug, in teens and adults with CF. , protocol number NCT04059094 BI 1399-0003
This study will look at the safety and effectiveness of BI 1265162, a drug intended to improve the clearance of mucus from the lungs. This study is for people with CF ages 12 and older.
12 Years and Older
5
7 weeks
ObservationalEnrolling Location: Multiple care centres across the US
Study to evaluate the effects of the triple-combination modulator, elexacaftor/texacaftor/ivacaftor (PROMISE) , protocol number NCT04038047 PROMISE
This observational study will measure the effects of the triple-combination therapy, elexacaftor/tezacaftor/ivacaftor, in people with CF. These drugs are intended to help CFTR protein function closer to normal. This study will look at how treatment with the triple-combination therapy affects people with CF across many different aspects of the disease.
Two Copies F508del or One Copy F508del