SomnusNooze
This new series highlights topics relating to sleep disorders that have been in the news and/or in our recent social media posts. Check here each month to make sure that you are up-to-date on the news relating to idiopathic hypersomnia and related sleep disorders!
SODIUM OXYBATE TO BE TESTED FOR EFFECTIVENESS WITH IH PATIENTS
On July 24, the University Hospital in Montpellier, France, announced a research study to evaluate the efficacy and tolerance of sodium oxybate in patients affected with idiopathic hypersomnia. This study, which is estimated to begin on October 1, will last two years and will involve approximately 48 participants who have previously been diagnosed with IH. This will be a randomized, double-blind, placebo-controlled trial (which is the gold-standard of testing), and will use the Epworth Sleepiness Scale to measure the outcomes. Sodium oxybate is marketed as Xyrem, which was approved for patients with narcolepsy by the FDA in 2002. And check out our updated Research Studies page to find out more about other ongoing studies for people with IH and related sleep disorders!
PITOLISANT COMING TO CANADA AND THE U.S.
On July 26, Endo International plc’s subsidiary Endo Ventures Limited announced that it had entered into 
definitive agreements with Bioprojet SCR to register, commercialize and distribute pitolisant on an exclusive basis in Canada. PITOLISANT is the first selective histamine H3-receptor antagonist/inverse agonist that enhances the activity of histaminergic neurons. (In layman’s terms, pitolisant increases the release of the brain chemical histamine to increase a patient’s wakefulness and alertness.) Pitolisant was approved in 2016 for use in the EU, where it is marketed as WAKIX. The drug is not yet approved in the U.S., but Harmony Biosciences, LLC announced on May 21st that the FDA had granted “Breakthrough Therapy” and “Fast Track” designations for pitolisant. Harmony’s stated goal is to obtain approval to market this drug in the U.S. in 2019. Currently Harmony is operating PEACE (their Pitolisant Expanded Access Clinical Evaluation) program through which qualified healthcare professionals in the U.S. can participate and interested patients with narcolepsy can enroll. Patients with idiopathic hypersomnia, narcolepsy, and other hypersomnias may also be able to access pitolisant via WEP Clinical.
HYPERSOMNIA BIOMARKER RESEARCH
EXCITING diagnostic research! Studies find that the presence of muscle tone during REM sleep is likely a biomarker for determining sleep disorders. Dr. Kiran Maski, a member of HF’s Medical Advisory Board, has found that the presence of muscle tone in children during their REM sleep, is a “very good diagnostic biomarker of pediatric #narcolepsy.” And other researchers have created a computerized algorithm (called STREAM) which can distinguish between narcolepsy type 1 and other sleep disorders, including IH, based on muscle tone variances measured by a person’s chin electrode during a sleep study. Read more HERE. #BeyondSleepy #research #sleep #hypersomnia #narcolepsy
PROMINENT CANADIAN NEUROLOGIST JOINS OUR MAB (Medical Advisory Board)
On August 4, the Hypersomnia Foundation announced that prominent 
Canadian neurologist Dr. Thanh Dang-Vu had joined our MAB (Medical Advisory Board). Attendees of our HF conference in June will remember Dr. Dang-Vu as the researcher who presented his team’s findings from their brain imaging studies. These findings, part of which were published in SLEEP in late 2017, demonstrated that participants with IH showed differences in regional cerebral blood flow compared to participants without IH.
SLEEPINESS GETS MORE PRESS
It’s great that “possible #sleep disorder” is mentioned as one of the reasons you might be sleepy during the daytime in this Irish newspaper article, but we also need idiopathic #hypersomnia & #KLS included alongside #apnea and #narcolepsy to better inform the public. So many cases of IH go undiagnosed because the public, the press (and even some in the medical community) are not aware of this sleep disorder! #BeyondSleepy
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