Program 1: People
- Journal Article
Evaluation of psychometric properties of patient-reported outcome measures frequently used in narcolepsy randomized controlled trials: a systematic review
Narcolepsy is a rare, neurological sleep disorder that carries an unacceptably high burden of disease on patients, family/carers, the community and healthcare system as a whole. This impact remains largely hidden due to inadequate data collection, management and utilisation within our healthcare system, having been designed to respond to individual diseases with much larger patient numbers. Patients and family/carers at the recent Parlimentary Inquiry into Sleep Health Awareness reported a general lack of awareness and education, an inability to access quality care, social consequences, lack of research and scientific knowledge and limited and expensive treatment options.
Higher Degree by Research Student