Center for Narcolepsy
The goals of the Stanford Center for Narcolepsy are to: find the cause of narcolepsy, develop new treatments and eventually prevent and cure this complex disorder.
Narcolepsy is a life-long, disabling illness that affects more than 1 in 2,000 Americans. Currently, most individuals with the disorder remain undiagnosed and untreated.
Narcolepsy is characterized by permanent, overwhelming feelings of sleepiness and fatigue. Other symptoms include abnormalities of dreaming sleep, such as dream-like hallucinations and feeling physically weak or paralyzed for a few seconds (see Symptoms). Narcolepsy symptoms typically start in childhood and adolescence. Current treatments are imperfect, but most patients regain approximately 80% function.
The Stanford Center for Narcolepsy was established in the 1980s. Today, it is the world leader in narcolepsy research and has published more than 300 articles on narcolepsy. A recent study commissioned by the Swedish Narcolepsy Council found that the Stanford Center for Narcolepsy leads research in this area and is the crucial node for collaborative projects.
The Center was the first to report that narcolepsy-cataplexy is caused by hypocretin (orexin) abnormalities in both animal models and humans. Many consider this the most important finding in sleep medicine in the last 50 years. (see FAQ and publications). One result of this finding is that several companies are working on a novel treatment approach for insomnia by developing hypocretin/orexin receptor antagonists. At Stanford, we are trying to do the opposite. We are developing drugs that stimulate hypocretin (orexin) receptors to replace the missing hypocretin in narcolepsy patients.
Today, under the direction of Dr. Emmanuel Mignot, the Stanford Center for Narcolepsy treats several hundred narcolepsy patients each year. Many of these patients also volunteer for our research protocols. As a result, our research database contains information on several thousand patients from multiple ethnic groups. This invaluable resource has led to many scientific breakthroughs, including the recent discovery that narcolepsy is an autoimmune disease. Following specific influenza flu infections, the immune system confuses a portion of the flu virus with hypocretin related proteins, destroying the 70,000 neurons in the brain that produce hypocretin. We are trying to discover exactly which immune cells are responsible for the immune attack. Our goal is to stop or prevent the process from occurring in susceptible individuals.
Since 2009, we found that narcolepsy onset is occurring in younger children. It is not uncommon for 6-11 year olds to suddenly develop narcolepsy. Furthermore, some Northern Europe countries used a particular flu vaccination against the H1N1 2009 strain called Pandemrix which triggered narcolepsy in some children (1/16,000 vaccinations in Finland, a 5-13 fold increase risk). The increase in childhood cases in the United States does not seem related to a vaccination. Instead the increase is likely due to the effectiveness of the 2009 H1N1 strain at initiating autoimmune narcolepsy. We are working very hard to help these children get proper treatment, as very few clinicians have experience treating children with this condition.
Do you have Narcolepsy? Interested in participating in a clinical trial?
SUVN-G3031 for Narcolepsy 1 or 2
Emmanuel Mignot, MD, PhD
Purpose: To study the safety and efficacy of study drug SUVN-G3031 as a possible treatment for NT1 and NT2
- 18-50 years old
- Diagnosis of narcolepsy type 1 or 2
- MSLT within 15 years showing ≤ 8 minutes with 2 or more SOREMPs
- An ESS score of ≥ 12
Time needed from participant: Up to 7 weeks of active participation. At least 5 clinic visits during that period
Vivian Liu (650) 721-5489