Collaboration
Cystic Fibrosis Australia (CFA) works closely with government entities, health service providers, research groups, not-for-profit’s (NFP) in the health and chronic disease sectors, and overseas colleagues and foundations. Collaboration allows us to be smarter with our research, services, and clinical improvement programs but most importantly it delivers better outcomes more quickly for people with cystic fibrosis (CF).
We consistently and proactively encourage collaboration to ensure the best gains are achieved in the fastest time, knowledge is shared, breakthroughs are celebrated and funds are not wasted through duplication.
The Lung Health Alliance
CFA is an official member of The Lung Health Alliance.
The Lung Health Alliance is a collective of national respiratory NFP organisations working together to improve the lung health of individuals and communities in Australia.
The Lung Health Alliance also contributes to the global effort for lung health.
The following organisations are members of the Alliance:
- Asthma Australia
- Australian Respiratory Council
- National Asthma Council Australia
- The Australian Lung Foundation
- The Thoracic Society of Australia and New Zealand (TSANZ).
Alliance activities are managed and monitored by the Lung Health Alliance Chief Executive Officers’ Group.
The Alliance work includes securing support for world class respiratory research, improving patient outcomes and advancing the diagnosis, treatment and search for a cure for respiratory diseases.
The Thoracic Society of Australia & New Zealand (TSANZ)
CFA works closely with TSANZ to increase understanding surrounding lung diseases, particularly CF.
Collaboration between CFA & TSANZ is done with a joint commitment to prevent respiratory illness, improve clinical care and improve outcomes for people living with CF.
Perx Health
Perx is an app that helps you simplify your daily health routine. Managing your medications and forming healthy habits can be tough but Perx helps by making it fun, easy, and rewarding to manage your medications and stick to your schedule.
CFA is proud to offer Perx to help people self-manage their condition and the ability to earn REAL rewards for doing so. It offers the ability to record your most important medical information, monitor progress against goals and keep track of all your appointments, prescription refills and history. It encourages those living with CF to feel empowered with their day-to-day management and improve their quality of life.
Perx is honored to work with CFA to provide support for day-to-day adherence and motivation to reduce disease burden and improve quality of life. We are proud to be able to offer the app completely FREE for people living with CF.
On sign-up, you may be asked for a Member Code – if so please enter “roses”.
Please contact the Perx team at support@perxhealth.com if you have any additional questions or issues during sign-up.
Beat CF
BEAT CF is a little different from most of the trials you’ve heard about or been involved in before. BEAT CF is a platform study. The study aims to optimize the management of CF exacerbations and will start by collecting routine health data. After this data collection phase, BEAT CF researchers will be able to set up multiple trials of different treatments, at the same time, to find out which treatments work best and which people they work best for. The study is enrolling children, teens, and adults with CF around Australia and is being coordinated at the University of Sydney. BEAT CF is open to all people with CF unless you’ve had a lung transplant.
This video explains more about BEAT CF.
Visit beatcf.org.au to learn more and register your interest to participate.
You can also follow the study on Twitter to stay up to date with trial news including announcements of new CF centres involved in the study.
Research Surveys
As the peak national organisation representing individuals with cystic fibrosis, we actively engage in collaborations with research and educational institutions, providing support to advance their knowledge across all aspects of CF.
Explore the links below to discover ongoing studies and surveys conducted by external organizations. We encourage your participation in any that align with your interests. Your valuable feedback and input contribute to researchers gaining a deeper understanding, ultimately aiding in their efforts to support all conditions associated with cystic fibrosis.
The CF Tummy Tracker is being created through CARDS-CF (a Comprehensive Approach to the Relief of Digestive Symptoms in Cystic Fibrosis) – a research study led by Professor Alan Smyth at Nottingham University Hospitals NHS Trust and funded by National Institute for Health Research (NIHR).
To provide your information for the study, please visit CF Tummy Tracker.
Share your experience of salt supplementation, hydration, sweat, and heart-related illness symptoms.
If you are a parent of a child aged 6 – 15 years old with a diagnosis of cystic fibrosis, please follow this link: Parent Link
If you are 16 years or older and have a diagnosis of cystic fibrosis, please follow this link: Patient Link
Sydney University is conducting a research study about the experiences of women with cystic fibrosis (CF) who have recently had a baby. This study aims to: a) Develop an understanding of
how women with CF experience pregnancy and motherhood and b) Gain an understanding of how mothers with CF prioritise their time and energy compared to mothers who don’t have CF.
To read more, please follow the link: Participation Information Statement.
Researchers at the University of Queensland are seeking feedback to understand what catheter complications are most important to you.
If you, your child, or someone you care for has had a central line, your feedback is required.
Please follow the link here: Central Line Feedback
This research hopes to look at how Trikafta has changed the burden of treatment regimens for people with cystic fibrosis (CF). There is a lack of research looking into the changes people have made to medications and other forms of treatments after starting Trikafta.
Please read the: Participation Information Sheet
If you would like to complete the survey, please follow the link: Medication Regime changes due to Trikafta in CF
