What is BANK CF?
BANK CF is a research biobank that stores around 40,000 biological samples (such as blood or tissue) and related health information from people with and without cystic fibrosis (CF).
These samples have been collected through CF research studies linked to the clinical program. BANK CF exists to provide a secure, long-term resource for future research, with the aim of improving our understanding of CF and supporting better respiratory health outcomes.
What is the Scientific Management Committee (SMC)?
The Scientific Management Committee (SMC) is the group that helps oversee how samples and data in BANK CF are used.
We are currently seeking expressions of interest from members of the CF community to join the committee as consumer representatives.
Families and participants have already consented for their samples to be stored in BANK CF and used in future research. Researchers in Australia and overseas can apply to access samples and data for approved studies.
The SMC helps review these requests to make sure the biobank is used responsibly, ethically, and in ways that are meaningful to the CF community. Consumer members are a very important part of this process, helping ensure that the future direction of BANK CF reflects the priorities and perspectives of people with lived experience.
Who should apply?
We are looking for people from the CF community who are interested in contributing their perspective to research decision-making. This may include people living with cystic fibrosis, or parents or carers of someone with CF.
You do not need a scientific or research background to be involved.
What would be expected if I joined?
• Share your perspectives and lived experience to help guide research priorities
• Review research proposals sent via email (usually with around 10 days to provide feedback)
• Attend occasional meetings (~1h) online (around 4-6 per year)
• We hope to have more than one consumer on the committee so this workload can be shared.
Is there compensation?
Consumer members will receive a small honorarium in recognition of their time and contribution. There is no fixed term for membership. You are welcome to stay on the committee for as long as it suits you, and you can step down at any time.
This is a great opportunity to be involved in decision-making and to help ensure the consumer voice is part of how CF research is guided.
If you’re interested in joining the BANK CF SMC, or would like more information, please contact me at Jessica.nichols@thekids.org.au.