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.
ObservationalEnrolling Location: Australia, Melbourne
The Prevalence and Significance of Gastro-oesophageal Reflux in Adults With Cystic Fibrosis Before and After Lung Transplantation, Together With the Effects of Physiotherapy Airway Clearance Techniques on Gastro-oesophageal Function , protocol number NCT00164021 NCT00164021
A factorial longitudinal study will be undertaken in adults with cystic fibrosis. Results will be compared with age matched healthy controls. It is not deemed appropriate to randomise patients with gastro-oesophageal reflux(GOR) to a treatment versus no treatment group as immediate treatment for GOR once diagnosed is regarded as obligatory. Subjects: 180 adults with CF will be recruited from the Adult Cystic Fibrosis Unit at the Alfred Hospital to participate in the study. The ambulatory studies will be undertaken during baseline state in the outpatient setting. Fifteen age matched control subjects will be recruited from the general population.
Age:
16-70 years
Mutation(s):
Not specified
FEV1% Predicted:
Not Specified
Number of Visits:
Length of Participation:
OtherEnrolling Location: Australia - VIC
The Alfred Step Test Exercise Protocols (A-STEP and A-STEPmax): Developed for Adults With Cystic Fibrosis (A-STEP/max) , protocol number NCT02717650
Feasibility and Validation of the Alfred Step Test Exercise Protocols (A-STEP and A-STEPmax): Developed to Assess Exercise Tolerance and Determine Maximum Oxygen Uptake in Adults With Cystic Fibrosis Across the Disease Spectrum
>18 years
FEV1 greater than 20%
Restore CFTR FunctionEnrolling Location: Australia
A Study to Evaluate Efficacy and Safety of Ivacaftor in Subjects With Cystic Fibrosis Aged 3 Through 5 Years Who Have a Specified CFTR Gating Mutation , protocol number NCT02742519 VX15-770-123
A Phase 3b, 2-part, Randomized, Double-blind, Placebo-controlled Crossover Study With a Long-term Open-label Period to Investigate Ivacaftor in Subjects With Cystic Fibrosis Aged 3 Through 5 Years Who Have a Specified CFTR Gating Mutation
3-5 years
Restore CFTR FunctionCompleted with results Location: LOCATION: Perth Linear Clinical Research, Contact: Jennifer Seabourne CONTACT: [email protected] Brisbane-Q-pharm CONTACT: Sharon Rankine Phone: 0439 664 900,; Email: [email protected]
A Study to Assess the Safety, Tolerability and PK Profile of FDL176 in Healthy and CF Participants , protocol number NCT03173573 FDL176-2016-01
This is a 5-part study. Part 1 is a double blind, placebo-controlled, dose escalation, first-in-human study to assess the safety, tolerability and PK profiles following single oral administration of FDL176 to healthy male participants. Part 2 is a single dose, open-label study in healthy male participants to determine the effect of food on the PK profile of FDL176. Part 3 is a single dose, double blind, placebo-controlled study in healthy female participants to assess the PK, safety and tolerability profiles of FDL176. Part 4 is a randomised, double-blind, placebo-controlled, dose-escalation study to assess the safety, tolerability and PK profiles following multiple oral administrations of FDL176 to healthy male and female participants. Part 5 is a single dose, open-label study in male and female participants with CF to determine the PK profile of FDL176.
18 Years to 55 Years
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
18 Years to 85 Years
Homozygous for the F508del-CFTR mutation.
(FEV1) >40% of predicted normal for age, sex and height.
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
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 FunctionEnrolling 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 NCT04058353 VX18-445-104
This study will look at the safety and effectiveness of three CFTR modulators when taken in combination: VX-445 (elexacaftor), tezacaftor and ivacaftor. CFTR modulators are drugs intended to help CFTR protein function closer to normal.
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