The Kids Research Institute Australia is committed to involving consumers and the community in all aspects of our research.
One way the Wal-yan Respiratory Research Centre provides the opportunity for consumers and community members to contribute to our research is through participation in one of our eight community reference groups.
Although each community reference group is unique, they all have a shared purpose to:
- support the development of partnerships between researchers, consumers, and research organisations
- provide a consumer perspective to the research being conducted, and
- enhance the quality and relevance of research activities through consumer participation
Examples of how community reference group members may participate in research development and planning include:
- providing guidance on community priorities for research, how to carry out the research and how to communicate the results of the research
- providing advice and support on research grant applications and plain language summaries, and
- reviewing information sheets and questionnaires used in the process of study recruitment.
If you would like to get involved in our research, please email the relevant community reference group contact listed below, or email engagement@telethonkids.org.au.
Our community reference groups
INSPIRE (INnovative Solutions and Partnerships for Indigenous Respiratory Excellence) Consumer Reference Group of WA
Area of interest: This is a group for parents and guardians of Aboriginal children who have, or have had, lung sickness.
Purpose: To give a family perspective to both medical and research aspects of lung sickness.
Contact: Ms Erica Thompson, Ms Timeah Archer / +61 447 355 349, Ms Mikayla Garstone
Further information: https://www.telethonkids.org.au/our-research/chronic-and-severe-diseases/respiratory-health/BREATH/inspire-consumer-reference-group-of-wa/
Bronchiectasis Consumer Reference Group of WA
Area of interest: Bronchiectasis in children
Purpose: To provide a consumer perspective to both clinical and research aspects of bronchiectasis, pertaining to clinical and research priorities, practice, and policies.
Contact: Alana Harper
Child and Adolescent Cystic Fibrosis Consumer Reference Group of WA
Area of interest: Cystic fibrosis (CF), young children’s CF
Purpose: To provide a consumer perspective to both clinical and research aspects of cystic fibrosis, pertaining to clinical and research priorities, practice, and policies.
Contact: ARESTCF@telethonkids.org.au
Further information: https://arestcf.telethonkids.org.au/be-involved/consumer-reference-group/
MAP (Metabolomics to predict asthma in children) Consumer Reference Group
Area of interest: Diagnostic test for asthma
Purpose: The terms of reference for this group are currently being finalised.
Project information: Metabolomics to predict asthma in children (MAP Study) (telethonkids.org.au)
Contact: Jaqueline Macpherson
Neuromuscular Consumer Reference Group
Chaired and managed by Muscular Dystrophy WA
Area of interest: Neuromuscular impact on sleep and breathing
Purpose: To provide a community perspective on the research activities across The Kids Research Institute Australia, Muscular Dystrophy WA, Curtin University and Perth Children’s Hospital for the project titled Developing clinical predictors of disease progression in children with neuromuscular disorders.
Contact: Alana Harper
Next Generation CF Youth Consumer Reference Group
Area of interest: Cystic fibrosis (CF) in youth / teenagers
Purpose: To provide a community perspective on the research activities across The Kids Research Institute Australia and the research project Next Gen CF that is being run out of Perth Children’s Hospital.
Contact: Alana Harper or Grace Pettigrew
Preterm Community Reference Group
Area of interest: Research that involves preterm kids
Purpose: To provide a community perspective on the research activities led from The Kids Research Institute Australia and across affiliated universities, hospitals, research institutes and community groups for ongoing and future research projects into the impact of preterm birth.
Contact: Neave Garland
Western Australian Epithelial Research Program (WAERP) Consumer Reference Group
Area of interest: Asthma, cystic fibrosis and other respiratory disorders in kids, airway epithelium
Purpose: To provide community perspective on asthma and other respiratory research activities within the Airway Epithelial Research Group at The Kids Research Institute Australia.
Contact: Amy Greenly
Further information: https://walyanrespiratory.telethonkids.org.au/projects/WAERP/community-involvement/