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.
On sign-up, you may be asked for a Member Code – if so please enter “roses”.
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.
To find out more and to sign up for your free access: CLICK HERE
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 survey is expected to take around 30 minutes to complete and can be accessed by CLICKING HERE
Study Title: Gut Research Advancing A Mechanistic and Personalised Understanding of Symptoms in Cystic Fibrosis (GRAMPUS-CF)
Exploring gut symptom ‘clusters’ in cystic fibrosis
Many people with CF experience tummy symptoms that affect their daily life. Despite the availability of new CF modulator treatments such as Kaftrio/Trikafta, CF gut problems persist in many people.
Not every person with CF experiences the same combination of GI symptoms, so it’s likely there are different mechanisms that cause different combinations. This is what we aim to study.
If we can identify these different ‘clusters’ of symptoms and the mechanisms behind each one, we can develop better, more personalised treatments for people with cystic fibrosis.
What do I have to do?
We would like you to complete some a few short questionnaires on symptoms and food intake, on three occasions, six months apart.
Questionnaire details are outlined in more detail on our website or via our Participant Information sheet.
Who can get involved?
Adults and children (aged 6-15 years) with CF.
People with CF anywhere in the world can get involved in group A remotely using our app.
Your participation will be helpful whether or not you have trouble with gut symptoms and whether or not you are taking one of the new CF modulator drugs.
Thank you for your support in driving individualised treatments for gut symptoms!
Project Title: Patient-Reported Outcome Measures (PROMs) module in the Australian Cystic Fibrosis Data Registry
Background
The Australian Cystic Fibrosis Data Registry (ACFDR), established in 1998 by Cystic Fibrosis Australia (CFA), collects key health and demographic data on people with CF (pwCF). However, it does not currently capture patient-reported outcome measures (PROMs), which are essential for assessing psychosocial wellbeing alongside clinical care. This project, funded by the Commonwealth Department of Health, aims to develop a PROMs module to enhance the registry and complement national CF clinical guidelines.
Research Overview
This study involves interviews and/or focus groups with pwCF, caregivers, and clinicians to identify the most suitable PROMs instrument. Participants will review selected instruments via email and provide feedback on relevance, length, completion time, administration frequency, and data reporting. Sessions will be conducted via Zoom, lasting 30–45 minutes, and will be audio recorded.
Participant Selection
You have been chosen for this research because you expressed interest in participating in this project through CFA Facebook Page or Website.
Consent & Withdrawal
Participation is voluntary. Before the interview, verbal consent will be required. You may withdraw anytime before data analysis without explanation, and any collected data will be deleted immediately. Your decision will not impact your treatment, care, or relationship with Monash University.
Click Participate Information sheet for more details.
Project Title: Reproductive and sexual health care survey of Australian adults living with cystic fibrosis to help co-design service provisions
1. Who should take part in this clinical study?
We would like to invite you to take part in our clinical study. This is because you have cystic fibrosis and are >18 years of age.
2. Why are we doing this research?
In this survey we are trying to find out more about the reproductive and sexual healthcare needs of adult women and men living with cystic fibrosis (CF) so we can help integrate this into routine and wholistic clinical care. With the introduction of modulator therapies, adults with CF are anticipated to have increased life expectancy. There is increased incidence of pregnancies and transition to menopause in women. And in men, fertility and sexual function are also important.
We believe addressing reproductive and sexual healthcare needs of adult women and men living with CF is an important part of the clinical care that needs to be provided by the CF multidisciplinary team.
3. What is involved in the study?
Answering the survey questions to the best of your ability. All questions are in English language.
4. Who is conducting and paying for this research?
Dr Shanal Kumar is an adult endocrinologist (hormone specialist) at the Prince Charles Hospital CF service and is leading this research. There is no funding for this research currently. There is no cost to you (other than your time) to participate in this survey. You will not be renumerated to complete this survey.
5. What will happen to the confidential information about me?
We will keep all survey information confidential and securely stored. No personal information about you, such as your name and address will be collected.
CLICK this for more details and take survey!