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.
ObservationalRecruiting Location: Australia - NSW, QLD, SA
Insulin Deficiency, Early Action , protocol number NCT01100892
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. Te 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.
Age:
5 - 19 Years
Mutation(s):
CFID1 or CFID2
FEV1% Predicted:
Not specified
Number of Visits:
Length of Participation:
OtherRecruiting Location: Australia
Does tiotropium bromide lead to bronchodilation in cystic fibrosis? , protocol number ACTRN12605000728639
Does tiotropium bromide lead to bronchodilation in cystic fibrosis?
Not Specified
Anti-InfectiveEnrolling Location: Australia
Evaluation of CF patient perception of symptom improvement following inhaled antibiotic treatment. , protocol number ACTRN12605000602628
Diagnosis of CF and chronic PA infection (defined as cultures positive for PA for > 6 months, including most recent culture). Have adequate understanding of English to give informed consent and follow study procedures. Patient must have completed their most recent course of TOBI or aerosolized tobramycin solution or any other aerosolized antibiotic at least 28 days prior to study entry. Parent/guardian of children 6 to 13 years old must agree to complete the CFQ-R and Global Rating of Change Questionnaires. Patient's physician must have decided to prescribe a 28 day course of TOBI for treatment of clinical symptoms (increased cough, increased sputum production/chest congestion, decreased exercise tolerance, or decreased appetite).
6 years - no stated upper limit
OtherEnrolling Location: Australia
Effect of a targetted exercise program versus current exercise practice on function, activity and participation of young people with cystic fibrosis: a randomised, controlled trial , protocol number ACTRN12607000612415
Exercise is a vital component of the physiotherapy management for young people with cystic fibrosis (CF). The overall aim of this research is to strengthen knowledge about best practice exercise programs for this population. This study compares effects of two exercise programs (the current exercise practice versus a novel targeted exercise program). Ultimately, it is expected that with improved exercise programs, young people with CF may have improved body structure and function, and activity and participation levels, leading to enhanced quality of life.
18-70 years
40% predicted or above
Mucociliary ClearanceRecruiting Location: Melbourne, Sydney, Newcastle and Brisbane, Australia
A randomised, double blind, study of inhaled alginate oligosaccharide (OligoG) compared to placebo in patients with Cystic Fibrosis , protocol number ORDCF205
This clinical trial is to investigate whether inhaled OligoG dry powder for inhalation (DPI) is effective in the treatment of Cystic Fibrosis, and to further evaluate the safety and tolerability of OligoG DPI. Participants will be treated for 12 weeks with either OligoG, or placebo, while continuing to use any medications that they are already using. Following the results of the 12 week treatment, patients will be offered open label treatment with OligoG for 48 weeks, while continuing to use any medications they are currently using. Only suitable for participants taking continuous or cyclic inhaled antibiotics, and no simultaneous unstable illness. Direct your enquiry to National Office.
18 years and Older
No mutation requirement - Only suitable for participants not taking CFTR modulators
40-90%
7
12 weeks (followed option of access to Oligog for 1 year, with 5 study visits)
OtherEnrolling Location: Monash Health - Melbourne
Cystic Fibrosis Related Diabetes (CFRD) Model of care: Optimising Patient Centred Healthcare Delivery in the Inpatient and Outpatient Setting , protocol number RES-18-0000-183 Monash Health Ref RES-18-0000-183 Monash Health Ref
Cystic Fibrosis Related Diabetes Clinical Care Do you have cystic fibrosis related diabetes (CFRD)? Do you feel that clinical services managing CFRD could be improved upon? We want to hear your thoughts on how clinical care for CFRD can be optimised. The purpose of this research is to determine the requirements of adult patients with CFRD. We wish to assess barriers and enablers to provision of optimal care of adults with CFRD with a view to ultimately improving clinical outcomes for all people with CFRD. If you would like to participate, please follow the link to an anonymous survey that should take about 15 minutes to complete. Click here to complete CFRD survey This research has been initiated by the researchers at Monash Medical Centre in Melbourne, Victoria. This project has been approved by Monash Health Human Research Ethics Committee.
1
approx. 30 mins
Mucociliary ClearanceEnrolling Location: Australian Sites: Adelaide, Brisbane, Melbourne, Newcastle, Sydney Westmead, Sydney Randwick, Perth
Saline Hypertonic in pre-schoolers + CT (SHIP-CT) , protocol number NCT02950883 & ACTRN12615001067561p SHIP002 (SHIPCT)
The purpose of this study is to assess whether inhalation of 7% hypertonic saline (HS) twice daily for 48 weeks reduces structural lung disease as assessed by computed tomography (CT) in comparison with inhalation of 0.9% isotonic saline (IS) in preschool children (ages 3 to 6) with cystic fibrosis.
3-5 years
A documented genotype with two disease-causing mutations in the CFTR gene
6
54 weeks
Restore CFTR FunctionCompleted with results Location: USA & Australia
Phase 3 study of Ataluren in people with CF who have a nonsense mutation and are not taking aminoglycosides. , protocol number NCT02139306 PTC124-GD-021-CF
This study is taking place at multiple care centers across the U.S. It looked at the effectiveness and safety of the oral drug ataluren in people with CF who have a nonsense mutation of cystic fibrosis. This study used a placebo control.
6 Years and Older
One Copy F508del or No Copies F508del
60 to 90%
10
56 weeks
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US & Australia
A Study to Evaluate the Safety and Efficacy of Long Term Treatment With VX-661 in Combination With Ivacaftor in Subjects With Cystic Fibrosis Who Have an F508del-CFTR Mutation , protocol number NCT02565914 VX14-661-110
This is a Phase 3, multicenter, open-label, 2-part rollover study in subjects with CF who are homozygous or heterozygous for the F508del-CFTR mutation and who participated in Studies NCT02070744, NCT02347657, NCT02516410, NCT02392234, NCT02412111, and NCT02508207. The study is designed to evaluate the safety and efficacy of long term treatment of VX-661 in combination with ivacaftor.
12 years and older
Restore CFTR FunctionEnrolling Location: Multicentre - Australia 1. Prince Charles Hospital, 2. Lady Cilento, 3. SCGH
Phase 3 study of VX-659 triple combination drug in people with CF 12 years and older who have one copy of the F508del mutation and one copy of a minimal function mutation (VX17-659-102) , protocol number NCT03447249 VX17-659-102
This randomized, placebo-controlled study will be taking place at multiple care centers across the U.S. It will evaluate the effectiveness, safety, and effect on the body of the drug VX-659 in combination with tezacaftor and ivacaftor. It is for people with cystic fibrosis ages 12 and older with one copy of the F508del CFTR mutation and one copy of a minimal function mutation
One copy F508del
40 - 90%
32 weeks