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 2026.
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: Western Australia
Family Surfing Activity for Children and adolescents with chronic conditions: Effects on Health and Well-being , protocol number ACTRN12622001168741
This study aims to evaluate the effects of a family-based surfing intervention on the physical and psychological wellbeing of children and adolescents with chronic conditions.
Age:
7-18 Years
Mutation(s):
Not specified
FEV1% Predicted:
Number of Visits:
Length of Participation:
Restore CFTR FunctionEnrolling Location: Multiple care centres across the US
Study of ELX-02 in adults with cystic fibrosis who have at least one nonsense mutation. (Eloxx EL-012 - Treatment Period 5, 6 and 7 (Kalydeco or Trikafta)) , protocol number NCT04135495
This is an open-label study, meaning that all participants will receive the drug ELX-02. Researchers will test the safety and tolerability of ELX-02 by tracking adverse events and other changes in the body. They will assess how the body processes ELX-02 by monitoring how much of the drug stays in the body. They will also study the drug’s effect on the body by tracking changes in lung function and sweat chloride.
18 Years and Older
No Copies F508del
40% or greater
8
9 weeks
Anti-InflammatoryCompleted with results Location: Multiple care centres across the US
Phase 2 study of CTX-4430 in people with CF (EMPIRE) (Celtaxsys CTX-4430) , protocol number Celtaxsys CTX-4430 NCT02443688
This study evaluated the safety and effectiveness of the anti-inflammatory drug CTX-4430 (acebilustat).
18-30 Years
No Mutation Requirement
50% or greater
15
1 Year
Restore CFTR FunctionEnrolling Location: Multiple US Centres
Study of Trikafta® in people with CF ages 12 years and older who have an N1303K CFTR mutation › , protocol number Trikafta® NCT03506061
This study will look at the effectiveness of Trikafta, a drug intended to help CFTR function closer to normal. This study is for people ages 12 and older who have two CFTR mutations not approved for Trikafta® and a least one of these mutations must be N1303K.
12 Years and Older
No FEV1 Limit
5
86 days
Study of Trikafta® in people with CF ages 12 years and older who have partial function CFTR mutations , protocol number Trikafta® NCT03506061
This study will look at the effectiveness of Trikafta®, a drug intended to help CFTR function closer to normal. This study is for people ages 12 and older who have two CFTR mutations not approved for Trikafta® and evidence of partial CFTR function. Partial function is defined as a sweat chloride level < 80 mmol/L and/or pancreatic sufficiency (no pancreatic enzyme supplement therapy).
2 months
OtherEnrolling Location: Multiple US locations
Study of 4D-710 in Adults with Cystic Fibrosis (4DMT 4D-710-C001) , protocol number 4DMT 4D-710-C001 NCT05248230
This study will test the safety and tolerability of 4D-710, an investigational gene therapy, in adults with CF who are not eligible for or are unable to tolerate CFTR modulator therapy.
50-100%
11
2 Years
Anti-InfectiveEnrolling Location: USA
Study of Lefamulin in Adults with CF (Nabriva NAB-BC-3781-1014) , protocol number Nabriva NAB-BC-3781-1014 NCT05225805
This study will look at the safety of and how the body processes lefamulin, a drug intended to treat infections in the lung. This study is for adults with CF.
6
13 days
Nutritional-GIEnrolling Location: Multiple care centres across the US
Study to evaluate Creon in adults with cystic fibrosis or chronic pancreatitis (AbbVie M21-432 ) , protocol number NCT05069597
This study will look at the symptoms of exocrine pancreatic insufficiency (EPI) in adults with cystic fibrosis or chronic pancreatitis treated with Creon with an alternate source of active drug. Creon is a drug approved to treat EPI.
3
142 days
Anti-InflammatoryEnrolling Location: Multiple US Centres
Study of INS1007/brensocatib tablets in adults with CF (Insmed INS1007-211) , protocol number NCT05090904
This study will look at the safety, tolerability, and how the body processes INS1007/brensocatib tablets, a drug intended to reduce inflammation.
40 to 90%
56 days
Study of VX-121 in people with CF ages 12 years and older who have either two copies of the F508del mutation, one copy of the F508del mutation and one copy of a gating or residual function mutation, or no copies of the F508del mutation and at least one other triple combination responsive CFTR mutation (Vertex VX20-121-103) , protocol number NCT05076149
This study will look at the safety and effectiveness of VX-121/tezacaftor/deutivacaftor, a drug combination intended to help CFTR protein function closer to normal. This study will test once-a-day dosing by using an active comparator. This means that some participants will receive the study drug or a placebo in the morning, and others will receive Trikafta®(elexacaftor/tezacaftor/ivacaftor) or a placebo in the morning and ivacaftor or a placebo in the evening. Researchers will test the effectiveness of the VX-121/tezacaftor/deutivacaftor combination by measuring changes in lung function and sweat chloride. This study may require lung function tests, sweat tests, blood draws, and/or other measures.
40 - 90%
10
64 weeks