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Quality of Life Measures
Manage episode 312495020 series 3236617
Innhold levert av David Cunnington and SCN2A Australia. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av David Cunnington and SCN2A Australia eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures.
To help understand what outcome measures are and why they are important to spoke to Dr Jenny Downs, Program Head of Disability Research at the Telethon Kids Institute in Perth.
You can listen to and subscribe to the SCN2A Insights podcast via Apple Podcasts, Spotify, and Google Podcasts or in your podcast app.
Links:
- Information on Quality of Life Inventory-Disability (QI-Disability)
- Validation study of QI-Disability
- Want to help developing quality of life measures for children with genetic epilepsy?
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