Our vision

 The optimal management of CF exacerbations (flare ups) is unknown and there is a lack of high-quality evidence from clinical trials to help guide doctors in prescribing different treatments. Every exacerbation has the potential to cause damage to the lungs and airways, so answering these questions are crucial for better medical management of CF.

Our vision is to:

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Establish a clinical database (within the BEAT CF Platform) to capture medical information and treatments received for exacerbations

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Implement a healthcare-embedded adaptive platform trial to systematically evaluate multiple treatment options across different ‘domains’ (e.g. antibiotics, anti-inflammatories, mucolytics etc.)

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Implement trial findings back into routine care in a timely manner with an overall aim to improve the management of CF exacerbations

Our team

We are a team of researchers, clinicians, statisticians, allied health professionals and community members around Australia.

The concept of BEAT CF began in 2017 and was the brainchild of Chief Investigator, Prof Tom Snelling, University of Sydney and Clinical Lead Investigator, Dr Andre Schultz, Perth Children’s Hospital (pictured in the photo banner above). To make this concept a reality, a strong collaborative network began between major CF centres around Australia to design and set up a healthcare-embedded platform trial for gaining knowledge and certainty in exacerbation management.

To tackle such a complex issue, we have invited people from different areas of healthcare to come together to help improve our understanding of exacerbations. This is what is represented in our logo for BEAT CF. The different sides of the cube represent different aspects of healthcare, coming together to support the platform.

Trial sites

The BEAT CF trial will begin enrolling in mid 2020, with the aim to expand to other major CF centres around Australia. Please see below for a list of active BEAT CF sites.

Active Sites:

NSW

Sydney Children’s Hospital, Randwick (SCHN)

WA

Sir Charles Gairdner Hospital

BEAT CF community

We strongly believe that high quality clinical trials are founded on community involvement. Mitch Messer is the BEAT CF Consumer Advisor. Mitch acts as a bridge between the project team and CF community to ensure their needs are communicated and delivered. In addition to this, we have 3 national BEAT CF Community Reference Groups (CRG) to represent the consumer voice and ensure the project is designed with the CF community in mind.

Mitch Messer

BEAT CF Consumer Advisor

 BEAT CF Adult CRG Members

Chair: Sophie Longton

Pia Sappl
Melanie McKean
Jane O’Brien
Cynthia Watterson-Bolst
Caz Boyd
Amanda Bearcroft

 BEAT CF Parents & Partners CRG Members

Chair: Kate Spaapen

Karen Cooper
Melissa Gibson
Donna Emery
Sarah Potts
Reanna Grey
Katherine Robins
Rebecca Dell
Holly Robins
Allanah Starr
Peter Maree
Sophie Robinson
Elissa Kadar
Wendy Endebrock-Brown
Davina Pasmanik
Emily Stride

 BEAT CF Youth CRG members (ages 13-25)

Chair: To be advised

Tylah Clark
Ellie Duncum
Daniel Maree
Marc Phegley-Giura

We are searching for more members to join our BEAT CF Youth Community Reference Group. If you have CF and you’re aged between 13-25 years, we’d love to hear from you. Please get in touch below to express your interest in becoming a member.