May 08 2025
Development of a narcolepsy patient-reported outcome measure and assessment of its psychometric properties
h in Research Study
Do you have narcolepsy? You might be interested in our study
We’re developing a narcolepsy questionnaire to capture what matters to you about narcolepsy:
Are you:
• Someone diagnosed with narcolepsy type 1 or type 2 by a specialist (and able to provide formal documentation confirming diagnosis)
• An adult (>18) living in the USA, Australia or Ireland
We need your help to build and test a new questionnaire so that it measures the real-life impact of narcolepsy.
The study is led by someone living with narcolepsy and run through The University of Sydney, Australia. Participants will be offered a $20 voucher (up to $60) as reimbursement for taking part in different steps.
What does it involve?
• A mix of surveys, one-on-one interviews and focus groups (approx. 1hr each).
• You won’t need to participate in the entire process if you don’t want to
When
Interviews: We will find a time that works best for all involved. Surveys can be completed at any time
If you’d like to participate, visit: www.measurenarcolepsy.com
More information
Dr Aaron Schokman
aaron.schokman@sydney.edu.au
T: +61 2 9515 1439