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!”
- CURRENTLY RECRUITING: Control subjects needed for hypersomnias study!
- IH PERSPECTIVES: “I Have IH” campaign reveals patient and supporter perspectives.
- TREATMENT UPDATE: European patients with IH to have pre-approval access to treatment.
- TRIAL RESULTS: Avadel Pharmaceuticals announces publication of data from REST-ON trial.
- KLS NEWS: LMOD3 gene variant identified as potential KLS diagnostic marker.
- GOOD NEWS!: Telehealth flexibilities assured for 2022 in the U.S.
- INSPIRING STORY: “My sleep disorder complicates my career, but it doesn’t mean I can’t succeed.”
- INTERESTING READ: New approach to describing sleep architecture helps direct sleep disorder therapy.
- PERSONAL JOURNEY: “I’ve lost so many years of my life to an insatiable need to sleep.”
Don’t worry if you’ve missed anything. We’ve got you covered!
CONTROL SUBJECTS NEEDED FOR HYPERSOMNIAS STUDY!
Please recruit your Atlanta-area friends and family who are normal sleepers ages 18 – 45! They’ll get paid to help Dr. Trotti’s research team as control subjects for their ongoing study of Hypersomnias and the Microbiome (investigating how the microorganisms in the gut might affect sleepiness). Participation involves a visit to the Sleep Center (12 Executive Park, Atlanta, GA, 30329) for questionnaires and a blood draw, and collecting a stool sample at home to bring back to the Sleep Center. Total time is estimated at 1 hour.
If you are a good sleeper without any diagnosed sleep disorders, please contact Natalie Fernandez (404-778-6114 or ) or Dr. Trotti () for more information.
Visit “Currently-Recruiting Research Studies” for information on other active studies.
I HAVE IH CAMPAIGN REVEALS PATIENT AND SUPPORTER PERSPECTIVES
To address the low understanding of idiopathic hypersomnia, Jazz Pharmaceuticals partnered with the Hypersomnia Foundation to launch “I Have IH,” a disease awareness campaign aimed at increasing knowledge of IH.
As part of the campaign, Jazz and the Hypersomnia Foundation conducted two surveys. They surveyed healthcare providers to measure their perceptions and knowledge and also surveyed both people living with this disorder as well as their supporters, to learn the true impact on the lives of people with IH.
Read the detailed results of these surveys.
Results from the healthcare provider surveys showed that there is a low understanding of IH among physicians, underscoring the need for more education and awareness.
Results from the patient and supporter surveys revealed that one of the issues people with IH face when seeking care for their symptoms at onset is receiving an accurate diagnosis.
“The results of this survey unveil important discoveries of the numerous barriers in a patient’s idiopathic hypersomnia diagnosis journey, including misdiagnosis and lack of understanding by the healthcare community,” said Darrel Drobnich, chief executive officer of the Hypersomnia Foundation. “We look forward to furthering our partnership with Jazz in order to increase awareness and reduce time to diagnosis for everyone living with this debilitating sleep disorder.”
EUROPEAN PATIENTS WITH IH TO HAVE PRE-APPROVAL ACCESS TO TREATMENT
NLS has announced a patient program enabling European patients with idiopathic hypersomnia (IH) to have pre-approval access to treatment with the company’s novel mazindol ER formulation.
Read the press release for more details.
AVADEL PHARMACEUTICALS ANNOUCES PUBLICATION OF DATA FROM REST-ON TRIAL
Avadel Pharmaceuticals announced the publication of secondary endpoint data from phase 3 of the REST-ON trial of FT218, an investigational formulation of sodium oxybate intended for the treatment of EDS or cataplexy in adults with narcolepsy.
Details and more information can be found HERE.
LMOD3 GENE VARIANT IDENTIFIED AS POTENTIAL KLS DIAGNOSTIC MARKER
KLS is rare and difficult to diagnose, especially when symptoms are atypical. Recent research points to LMOD3 variations as a potential diagnostic marker if confirmed by further research.
Read the complete article HERE.
The dramatic increase in adoption of telehealth that occurred in 2020 has allowed medical care that combines in-person and virtual services to become the new standard of care.
Details and more information can be found HERE.
“MY SLEEP DISORDER COMPLICATES MY CAREER, BUT IT DOESN’T MEAN I CAN’T SUCCEED.”
A neuroscientist tells of her struggles to get through school and have a career while living with narcolepsy.
Read her story in the online edition of “Science.”
NEW APPROACH TO DESCRIBING SLEEP ARCHITECTURE TO HELP DIRECT SLEEP DISORDER THERAPY
Sleep scientists Magdy Younes, MD, PhD, and associates have revealed new insights into clinical symptoms of sleep disorders found in sleep architecture but not detected through conventional metrics. They’ve accomplished this using an EEG metric named “Odds Ratio Product (ORP),” licensed exclusively to Cerebra Health, as a measure of sleep quality.
The paper, published in “Sleep,” identifies 9 base ORP Sleep Architecture profiles, which provide a framework to assist in diagnosing, managing, and understanding the underlying mechanisms of sleep disorders. ORP Sleep Architecture provides physicians with a visual point of reference, while diagnosing patients and prescribing treatment based on the nine profile types with suggested interpretation and clinical implications.
ORP is available through the Cerebra Sleep System, a home sleep test that is available for clinical use in Canada and pending US Food and Drug Administration clearance.
Read more HERE.
“I’VE LOST SO MANY YEARS OF MY LIFE TO AN INSATIABLE NEED TO SLEEP.”
She has a little-known condition called #hypersomnia, also known as excessive daytime sleepiness (EDS).
Read her story in the online edition of the “New York Post.”