If you’ve missed any of the latest news we’ve shared through our social media this month, don’t worry! Get up to date with this edition of “In Case You Missed It!”
- TRIAL UPDATE: Study expands recruitment to outside of U.S.
- INTERESTING READ: Dr. Arnulf presents need for increased study of IH.
- TRIAL NEWS: Phase 2a clinical trial for narcolepsy reaches full enrollment.
- UPCOMING EVENT: Project Sleep hosting narcolepsy event in Nashville.
Don’t worry if you’ve missed anything. We’ve got you covered!
STUDY EXPANDS RECRUITMENT TO INCLUDE PARTICIPANTS OUTSIDE OF THE U.S.
The Behavioral Sleep Medicine Lab at Northwestern University is seeking participants for their EXPLAIN Study (Examination of Partners and Loved Ones of Adults with Idiopathic Hypersomnia and Narcolepsy), to learn how family members are affected by their loved one’s IH/narcolepsy, how family members provide support, and the types of support family members themselves need.
You may be eligible if:
— You are an adult (18 or older).
— Your partner or adult family member has IH or narcolepsy.
Eligible volunteers will be asked to complete an online survey that will take approximately 15 minutes. Participants will not receive any compensation.
Read more about the EXPLAIN Study and visit “Currently-Recruiting Research Studies” for information on other active studies.
IDIOPATHIC HYPERSOMNIA NEEDS MORE ATTENTION TO OVERCOME CHALLENGES REGARDING DIAGNOSIS AND TREATMENT
At the recent SLEEP 2022 annual meeting of the Associated Professional Sleep Societies in Charlotte, North Carolina, Isabelle Arnulf, MD, PhD, Senior Neurologist and Professor of Neurology at the Pierre and Marie Curie Campus at Sorbonne University in Paris, France and a member of the Hypersomnia Foundation Medical Advisory Board, detailed the challenges of understanding different aspects of idiopathic hypersomnia (IH).
During Dr. Arnulf’s presentation, entitled “Sleeping Too Much: The Challenges of Idiopathic Hypersomnia,” she called for more devoted studying of IH in a similar fashion to how narcolepsy is studied. “[IH is] not that rare of a disorder and it’s a neglected disorder… Narcolepsy is like the big brother, attracting all the attention of the parents, while idiopathic hypersomnia is like the little sister. I think we must all fight to increase the attention to the little sister,” Arnulf remarked.
Read more about Dr. Arnulf’s presentation in an online edition of The American Journal of Managed Care (AJMC).
UPDATE ON CLINICAL TRIAL EVALUATING QUILIENCE FOR THE TREATMENT OF NARCOLEPSY
NLS Pharmaceutics announced that its Phase 2a clinical trial for Quilience in the treatment of narcolepsy is now fully enrolled, with top-line results anticipated to be presented at a symposium during the European Sleep Research Society Congress (ESRS), being held September 27-30, 2022 in Athens, Greece. Additionally, the Company reports that enrollment and ongoing patient dosing in its OLE study for Quilience monotherapy continue to exhibit favorable trends.
Read the full announcement HERE.
PROJECT SLEEP HOSTING NARCOLEPSY EVENT IN NASHVILLE
Join Project Sleep in Nashville for an empowering one-day event! On Saturday, August 13, 2022, Project Sleep will be hosting “Innovations in Narcolepsy Awareness & Advocacy,” a unique one-day meeting to empower the community with updates from the forefront of narcolepsy advocacy and awareness.
Registration is $25 per person and includes lunch. Space is limited. Learn more and register at the Project Sleep website.
Who should attend?
All are welcome and a wide range of people with various perspectives are encouraged to attend, including people living with sleep disorders, loved ones, friends, clinicians, researchers, drug developers, and educators.
The event will take place at the Scarritt Bennett Center, located at 1027 18th Ave S, Laskey Great Hall, Nashville, TN 37212.