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QUality Of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) – Paediatric Quality of Life Multi-instrument Comparison Study

Home Research projects using our data QUality Of Life in Kids: Key evidence to…

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. 


More projects

Re-analysis of genomic data from Epileptic Encephalopathy Flagship

The Australian Undiagnosed Diseases Network (UDN-Aus): An internationally networked national approach for transforming diagnosis for individuals living with rare diseases

Genomic diagnosis and gene discovery in rare disease via analysis of existing samples and datasets

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