MEDIA RELEASE
Australians affected by asbestos asked what researchers should study next
Australians affected by asbestos exposure and asbestos-related diseases are being invited to help identify the questions that should guide future health and medical research.
The National Centre for Asbestos Related Diseases (NCARD) has launched Asbestos Voices: Defining Research Needs, a national survey seeking input from people with lived experience of asbestos exposure and disease. Participants will be asked to identify the questions and issues they believe should be priorities for future research.
Australia continues to experience a substantial burden of asbestos-related disease and has one of the highest rates of mesothelioma in the world. Despite advances in diagnosis, treatment and supportive care, important questions remain about how best to improve outcomes for people affected by asbestos-related diseases.
The survey is open to:
- People who have been exposed to asbestos, whether or not they have developed disease
- People diagnosed with an asbestos-related disease
- Carers, family members and loved ones of those affected
- Healthcare professionals involved in the care of people with asbestos-related disease
- Consumer advocates and community representatives
Professor Jenette Creaney, Principal Investigator and Scientific Director of NCARD, said the survey aimed to ensure future research was informed by the experiences and priorities of the people most affected.
“Researchers do not always see the same priorities as patients, families and people living with the consequences of asbestos exposure,” Professor Creaney said.
“We want to understand what questions matter most to the community so that future research is informed by their experiences and concerns.”
Participants will be invited to identify up to three questions they believe should be addressed through research. These may relate to living with asbestos exposure, diagnosis, treatment, supportive care, or other aspects of asbestos-related disease.
The survey also includes optional questions about biobanking and attitudes towards donating health information and tissue samples for future research.
Dr Tanya Ward, Program Manager at NCARD, said people affected by asbestos often have important perspectives that may not be captured through traditional research planning processes.
“People frequently tell us there are questions they wish researchers could answer,” Dr Ward said.
“This survey provides an opportunity for those questions and concerns to be heard directly and helps us better understand the issues that are most important to the community.”
The survey is anonymous, voluntary and takes approximately 10–15 minutes to complete.
To participate, visit: https://redcap.link/ncardresearchvoices
For more information about the project, visit: www.ncard.org.au/asbestos-voices
Media contact:
Thierry Ng
Institute for Respiratory Health
Email: ncard-research@uwa.edu.au
Office: (08) 6151 1078
NCARD is part of the Institute for Respiratory Health and The University of Western Australia.
