Purpose: Stanford University and Mayo Clinic have partnered to evaluate the efficacy of low sodium oxybate on total sleep time in patients with idiopathic hypersomnia. The comprehensive assessments will yield detailed information about how low sodium oxybate affects sleep, breathing, and other physiological metrics, ultimately enhancing understanding of idiopathic hypersomnia.  Inclusion:  Must be willing to come to Redwood City, Ca for study visits Primary diagnosis of IH, according to ICSD-3 criteria (does not require MSLT) Has been prescribed, or at least recommended to start low ..read more

Purpose: In efforts to modernize clinical measurements of sleepiness, Stanford physicians partnered with the UK biobank to develop the Situational Sleepiness Scale. Inclusion: All are eligible to participate  Exclusion: None Time commitment: This survey takes about 5 minute to complete Coordinator Contact: If you are interested in participating in this study, please fill out the questionnaire at this link: https://is.gd/stanfordsleepSSS. Please email Slomba@stanford.edu with any questions. The post Validation of the Situational Sleepiness Scale appeared first on Wake Up Narcolepsy ..read more

Researchers are looking for adults 18-70 years of age with a diagnosis of narcolepsy type 1 (NT1) to take part in the Vibrance-1 Study. The purpose of this study is to research the safety and effectiveness of an investigational study drug taken orally once daily and how it may work in adults with NT1. Individuals with NT1 may be eligible for the Vibrance-1 Study. Orexin is a chemical in the brain that helps regulate the sleep/wake cycle. The investigational study drug, ALKS 2680, is an orexin-2 receptor agonist and may improve symptoms of sleep disorder, such as excessive daytime sleepiness (E ..read more

By Tatiana Maria Corbitt Hello and welcome back to Narcolepsy Perspectives!  Last time we discussed support groups and how they can be beneficial for people with Narcolepsy. I, for one, have experience participating in and volunteering as a facilitator for Wake Up Narcolepsy’s support groups. As a writer and artist with Narcolepsy, I have found support groups to be vital for my mental and physical wellbeing. Support groups are a great reminder that we are not alone in our struggles, and they help keep me on track with shamelessly setting boundaries when it comes to living with my conditio ..read more

Join us on May 9th at 2pm ET for “Narcolepsy Diagnostic Journey!” Hear Anthony Izzo, DO, and Jason Todd, MD, person with Narcolepsy, share about the journey to a Narcolepsy diagnosis. Learn the purpose of different tests, what the diagnostic criteria is, why it can take time to get a diagnosis and what to do after receiving one. Bring your questions for this opportunity to “ask the experts!” Register now! Anthony Izzo is board-certified in both neurology and sleep medicine and provides high quality, compassionate care to patients with sleep disorders. Jason Todd is a Pediatric Emergency Medici ..read more

Global Perspectives, an organization specialized in healthcare studies, is conducting a study to understand the relationship between narcolepsy symptoms and their effect on well-being. We are currently looking for patients diagnosed with narcolepsy, aged 18 years and above, to participate.  The study will be online and will consist of two successive surveys of about 30 min each within a time difference of 3 to 6 months between each survey. As a token of appreciation we are offering a 100USD incentive paid upon completion of the first survey and 65USD incentive upon completion of the seco ..read more

BOSTON and LONDON, April 22, 2024 (GLOBE NEWSWIRE) — Centessa Pharmaceuticals plc (Nasdaq: CNTA), a clinical-stage pharmaceutical company that aims to discover and develop medicines that are transformational for patients, today announced that the U.S. Food and Drug Administration (FDA) has cleared the Investigational New Drug application (IND) to initiate a Phase 1 first-in-human, clinical trial of ORX750 for the treatment of narcolepsy. ORX750 is an investigational, orally administered, highly potent and selective orexin receptor 2 (OX2R) agonist designed to directly target the underlying pat ..read more

The purpose of this study is to evaluate the safety, efficacy, pharmacokinetics (PK), and pharmacodynamics (PD) of MK-6552 in participants with Narcolepsy Type 1 (NT1). Part 1 will evaluate safety, tolerability, and PK of MK-6552 after administration of ascending doses in a single day to support a dose level decision for Part 2. Part 2 will investigate the PD of MK-6552 after single-day and multiple-day administration. Participants who complete Part 1 and demonstrate that they are able to tolerate at least one dose level of MK-6552 will participate in Part 2. View brochure here. Contact:  ..read more

This CNF survey helps understand caregivers’ experiences on their journey in child neurology. Caregivers of children with neurologic conditions can complete the brief survey through May 3rd here. This CNF survey helps understand clinicians’ and providers’ experiences in child neurology. Any healthcare professional working with children and youth with neurologic conditions can complete the brief survey through May 3rd here. Results will be shared with advocates and health care providers, so they are better able to serve families. The post Child Neurology Foundation (CNF) Needs Assessment Survey ..read more

PLYMOUTH MEETING, Pa., April 11, 2024 /PRNewswire/ — Harmony Biosciences Holdings, Inc. (Nasdaq: HRMY) today announced an exclusive licensing agreement with Bioprojet to develop, manufacture and commercialize TPM-1116, a highly potent and selective oral orexin-2 receptor (OX2R) agonist that will be evaluated for the treatment of narcolepsy and other sleep/wake disorders. TPM-1116 represents a new chemical series of OX2R agonists with the potential for a best-in-class clinical profile. Check out the full article here or the PDF version here. The post Harmony Biosciences Announces ..read more