Research & Advocacy

Cystic Fibrosis Research

Cystic Fibrosis WA (CFWA) in association with the Australian Cystic Fibrosis Research Trust (ACFRT) funds research to advance our understanding and treatment of cystic fibrosis and to provide better support for those with CF and their families.

Part proceeds of CFWA fundraising events provide a significant contribution to CF research annually. Some of these contributions include PhD Top-Up Scholarships, the Little Lungs Big Futures project and ACFRT approved research projects.

How Do We Choose What Research to Fund?

All applications for research are assessed by an independent scientific advisory committee through the ACFRT. The purpose of the trust is to allocate funds for high quality CF research and secure public and corporate support. This trust is administered free of charge by Cystic Fibrosis Australia.

Since its inception, the ACFRT has funded approximately 100 research projects and 20 PhD top up scholarships. This research, although small scale, often provides researchers with the data they require to apply for large National Health and Medical Research Council (NHMRC) grants.

The PhD Top Up Scholarships firmly establish CF as prime areas of interest in the minds of young researchers as they embark upon their career.

Interestingly one of the research projects funded though the ACFRT was the use of hypertonic saline which quickly became world’s best practice.

Little Lungs Big Futures Research Project

Little Lungs Big Futures, the largest collaborative CF research project ever undertaken in the southern hemisphere, has its origins in WA. This ground-breaking research project that is committed to reducing structural lung damage in infants with CF by 50% within five years.

Little Lungs Big Futures is led out of the Telethon Kids Institute in Perth. It has collaborators in Victoria, Queensland and the USA. This ambitious $20m research project has already raised nearly $3m and is currently seeking funds from around the world.

For further information, please contact Nigel Barker CEO CFWA via email (ceo@cfwa.org.au) or on 08 6457 7333.

PhD Top Up Scholarships

We know that many of those who are committed to CF research begin these studies early in their careers. We want to help as many excellent young people as possible conduct research projects on cystic fibrosis for higher degree study.

CFWA funds PhD top up scholarship through the ACFRT grant of $12,500 per annum for three years, for students who are conducting research for a higher degree (PhD, MD or equivalent) on a cystic fibrosis research project.

The scholarships are awarded to individuals who already have an award of a studentship and fees, such as an APA, a University post-graduate award, an NHMRC Studentship or equivalent. Applications are welcome from those carrying out laboratory, clinical, allied health or public health projects.

For more information or to apply for a top-up scholarship please contact our finance and Administration Manager via email (accounts@cfwa.org.au) or on 08 6457 7333.

CFWA Funded PhD Top Up Scholarships

CFWA has funded 5 PhD Top-Up Scholarships to date.

Scholar Funder Year Awarded Project
Samuel Montgomery

Hardie Foundation Scholarship

2017

The role of Interleukin and necrosis leading to neutrophilic inflammation in children with cystic fibrosis.

 

Kelly Martinovich

CFWA Golf Classic

2017

Personalised antisense oligonucleotide therapy to correct CFTR function in Cystic Fibrosis patients.

 

Clara Mok

CFWA Golf Classic

2016

To characterise in detail the trapped air appearance on CT in early CF. Specifically, aim to further validate functional MRI in the lungs and use this information to determine the cause of CT trapped air. Validation of functional MRI in the lungs will provide greater insight into the mechanisms underlying early CF-lung disease progression.

 

Puvvadi Venkataravanamma

Conquer Cystic Fibrosis

2014

Research into the impact of acidity of the liquid lining of the airway by comparing children with and without cystic fibrosis; correcting the acidity is shown to normalise the body’s reaction to bacteria.

 

Tim Rosenow

Lung Distance Runners

2012

Research into quantitative air trapping through CT assessments of structural lung disease in cystic fibrosis.

 

Cindy Branch-Smith

SBA Foundation

2012

Investigating levels of stress, depression and family and relationship functioning among families of young children with cystic fibrosis, and relating these to health in the child.

 

Luke Garratt

McCusker Family Trust

2011

Focused in the laboratory setting using airway cells collected from children and working with levels of neutrophil elastase (NE), a product of the body’s inflammatory response and strongly linked to physical changes in lung structure – seen in the AREST-CF cohort. The hope is that we can then explore treatment options for children with CF to counter the effects of NE.

 

Our Collaboration with Telethon Kids Institute

Child and Adolescent CF Consumer Reference Group

This group is primarily made up of parents of children with CF. Other representatives include an adult with CF, CFWA, an adult sibling, researchers from Telethon Kids Institute (TKI) and the Perth Children’s Hospital (PCH) CF Centre Director. The aims of the group are to:

  • Support the development of partnerships between consumers, researchers, research organisations and clinical staff.
  • Provide a consumer perspective to both clinical and research aspects of cystic fibrosis.
  • Advise about research and clinical priorities, practice and policies.
  • Enhance the quality and relevance of research and clinical activities through consumer participation.

For more information about this group visit the Involving People in Research website.

Evening with CF Scientists

Each May, CFWA and TKI host an annual “Evening with CF Scientists”. A range of speakers showcase cutting edge research, some of which has not as yet been published. This event has continued to grow and for those that are not able to attend is filmed and accessible online.

Regional “Evening with CF Scientists”

In 2017 we held our first regional research evening in Bunbury. This was generously funded by Telethon and was a collaboration between CFWA and TKI. We provided an overview of CFWA funded research and a CF researcher provided an overview of current research projects currently undertaken by TKI.

Clinical Trials

Clinical Trials are an important part of developing new treatments for cystic fibrosis. Cystic Fibrosis Australia (CFA) has developed a Clinical Trials portal with important information about CF clinical trials in Australia, including how you or your child can get involved.

Advocacy

Our advocacy operates on three levels: Individually, assistance for issues around access to services including support letters for residency, funding applications for equipment and access to other programs as required such as leadership camps for young adults.

At a State level CFWA have advocated on behalf of our members for subsidised parking, hospital Wi-Fi and increased staffing levels at the hospitals.

Nationally, CFA has lead various advocacy campaigns which have been contributed to by the State and Territory CF organisations including CFWA. The most recent of these were the subsidised access to Kalydeco and Orkambi. These two medications are the first of a new class of drugs to address the underlying course of the disease and are a quantum leap towards achieving our vision of Lives Unaffected by CF.

US Drug Development Pipeline

The Drug Development Pipeline is a website you can use to track the progress of drugs through the different phases of clinical research, through to approval by the U.S. Food and Drug Administration (FDA). Please note this website is for the US but provides an insight into new treatment developments.

For information on the drug development pipeline click here.

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