Nexus Narcolepsy Registry

The NEXUS Narcolepsy Registry research study is now complete and the registry is closed.

We thank you for your participation in this important research!

As a direct result of your participation over this multi-year study, two manuscripts were published and several abstracts and posters were presented at conferences. All of which helped researchers and clinicians better understand narcolepsy.

You may read the two manuscripts that were published by following these links:

The Nexus Narcolepsy Registry: methodology, study population characteristics, and patterns and predictors of narcolepsy diagnosis

https://doi.org/10.1016/j.sleep.2021.06.008

Highlights from this manuscript include the following:

  • Narcolepsy is often misdiagnosed.
  • Narcolepsy onset commonly occurs during childhood or adolescence.
  • Diagnosis of narcolepsy typically takes many years, with multiple consultations.
  • Patients whose symptoms began in childhood have longer delays in diagnosis.

Assessing the impact of sodium oxybate treatment on functioning, productivity, and health-related quality of life in patients with narcolepsy: findings from the Nexus Narcolepsy Registry (waves 1-4)

https://doi.org/10.1016/j.sleep.2021.06.010

Highlights from this manuscript include the following:

  • Participants taking sodium oxybate report less daytime sleepiness than those not taking sodium oxybate.
  • Participants taking sodium oxybate report better sleep quality than those not taking sodium oxybate.
  • Participants taking sodium oxybate demonstrate better health-related quality of life than those not taking sodium oxybate.

If you would like the opportunity to participate in future research studies related to Narcolepsy, please register an account on the Invitae Narcolepsy CONNECT PIN at this link:

https://connect.invitae.com/org/narcolepsy

We will share invitations to participate in future research studies as they become available with those who have accounts on the Invitae Narcolepsy CONNECT PIN.

Thank you again for your participation in this important research!