Primary organisation: Murdoch Children's Research Institute (MCRI)
Principal Investigator: Ms Renee Jones
Flagship requested: Brain malformations, Epileptic encephalopathy, Leukodystrophies, Mitochondrial disorders
Co-applicant: Kim Dalziel (MCRI)
Approval date: October 2021
Applicant’s project summary:
Each year, researchers and doctors work to find better tests, treatments and services for children. They often use questionnaires that ask about a child’s general health (also called ‘health related quality of life’) to understand how these tests, treatments and services improve children’s lives. However, sometimes this can be hard as there is a lack of evidence on how well these health related quality of life (HRQoL) questionnaires perform in children. More evidence on the performance of these questionnaires is required to guide decision making. This project will compare lots of different HRQoL questionnaires in children to see how each questionnaire performs. By comparing these different measures in children of different ages and with different health conditions, we hope to understand which measures are best to use for which children. As part of this, it is important to understand how these measures perform for children with rare genetic conditions.