A team of renowned narcolepsy researchers are collaborating to create this narcolepsy registry. By tracking a large number of people with narcolepsy over several years, we will learn more about the experiences of people who have been diagnosed with narcolepsy, the impact the condition has on the lives of those affected, and how the condition changes over time.
The findings from this registry will be published and shared at medical meetings with the hope of stimulating new research and discoveries that can aid in the diagnosis and treatment of narcolepsy.
If you choose to participate in this important project, you will be asked to complete a series of questions every 6 months about yourself, your symptoms, your experience with diagnosis and treatment, as well as your quality of life, productivity and other impacts on your life. Your identity and all of your responses will be completely confidential.
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About NEXUS
Nexus is a collaboration between academic institutions, advocacy and industry to answer important questions about narcolepsy.
Who can join?
Adults (18 and over) who have been diagnosed with narcolepsy by a doctor.
Why should I join?
To help researchers learn more about narcolepsy and the best ways to manage it.
What do I need to do?
Once you have registered for NEXUS, you will be invited to complete a questionnaire describing your own narcolepsy experience, diagnosis, symptoms and treatment. Participants will be asked to complete follow-up questionnaires every six months.