Introducing the Nexus Registry

Posted by on Aug 7, 2015 in Awareness, Research

18_NexusLogo255p_clrWake Up Narcolepsy is collaborating with leaders in the narcolepsy community to support the Nexus Registry. The Nexus Registry is a safe, anonymous online registry that will track people with narcolepsy over several years. Check out this video about the Nexus Narcolepsy Registry.

The Nexus Narcolepsy Registry is an effort by the narcolepsy research and advocacy communities in collaboration with Jazz Pharmaceuticals that will collect de-identified data from a large group of people with narcolepsy over several years in order to shed light on the impact of the condition on people’s lives. The findings will be presented at medical meetings, with the goal of stimulating new research to aid the diagnosis and treatment of narcolepsy. Learn more about the registry by watching this video or by visiting www.narcolepsyregistry.com. Take a look and share with friends who may want to register as well.”

The goals of the registry are to learn more about people who have been diagnosed with narcolepsy, the impact this disease has on their lives and how the condition changes over time. Registering with the Nexus Registry will also provide critical data for researchers who are working towards better treatment options and eventually a cure for narcolepsy. Please visit https://narcolepsy.patientcrossroads.org/?org=narcolepsy to register today.

1 Comment

  1. Vickie Eaton
    August 16, 2015

    This registry is an excellent idea. Researchers need access to information that only a narcoleptic can provide.

    Reply

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