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 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.
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.
Age:
18 years and Older
Mutation(s):
No mutation requirement - Only suitable for participants not taking CFTR modulators
FEV1% Predicted:
40-90%
Number of Visits:
7
Length of Participation:
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.
Not Specified
Not specified
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
BehavioralEnrolling Location: Australia
Engaging and re-connecting 'at-risk' children with chronic respiratory illness. , protocol number ACTRN12607000515493
Children with chronic illness sometimes feel disconnected and lonely. In this study we will evaluate the use of a psycho-social intervention program for 'at-risk' children (ie. child with chronic illness, low socio-economic groups) to improve their sense of well-being, adherence to therapies and health outcomes.
10-15 years
BehavioralNot yet recruiting Location: Australia
Stretching in cystic fibrosis: does it improve the quality of life and measures of kung function. , protocol number ACTRN12608000484347
Stretching in cystic fibrosis: does it improve the quality of life and measures of kung function.
18-70 years
>40% or above
Anti-InfectiveEnrolling Location: Australia
A comparative assessment of the clinical impact , protocol number ACTRN12607000349448
This study is designed to provide vitally needed information on the clinical implications of being infected by a clonal strain of P. aeruginosa and the risk factors for the acquisition of a clonal strain. This new information will provide a rational basis for the need for changes to infection control policies and better outcome predictors for patients infected with clonal strains of P. aeruginosa.
2-75 years
OtherRecruiting Location: Australia
Continuous infusion antipseudomonal beta-lactams versus standard short infusions in the treatment of acute infective exacerbations in patients with cystic fibrosis - impact on clinical and microbiological outcomes. , protocol number NCT01667094 ACTRN12612000945820
Cystic fibrosis (CF) is an inherited disorder which results in increased thickness of secretions, especially in the lungs. By adulthood, the majority of patients with CF will have bacteria living in their lungs, called Pseudomonas which can cause lung infections. This usually results in worsening respiratory symptoms and often an acute deterioration in their lung function. They are usually treated with antibiotics that target the Pseudomonas aeruginosa. These antibiotics are typically given as short intravenous infusions several times a day. This study aims to compare the standard method of giving these antibiotics with a different strategy of giving these antibiotics to see if this can improve the outcomes of treatment of these infections and reduce the amount of Pseudomonas aeruginosa in the lungs of these patients. This strategy consists of giving the same antibiotics continuously, to ensure there is always enough antibiotic in the bloodstream and the lung to be able to kill the bacteria.
18 Years and Older
0