Advancing Hypersomnia Research at University Hospitals

Innovations in Pulmonology, Critical Care & Sleep Medicine Spring 2025

Hypersomnia disorders, such as narcolepsy, are often isolating for individuals and misunderstood by family members, teachers and employers. Characterized by excessive daytime sleepiness or grogginess despite adequate rest at night, the condition has long been underreported or misattributed as depression or laziness.

Sally Ibrahim, MD

“Symptoms of hypersomnia often present in childhood but can go unrecognized,” says Sally Ibrahim, MD, who specializes in treating the condition and its subtypes in pediatric and adult patients. “It is a passion of mine to advocate for individuals — particularly children and young adults — who may have been overlooked by society.” 

The Director of Pediatric Sleep Medicine at University Hospitals Rainbow Babies & Children’s, Dr. Ibrahim has contributed to national research initiatives that are advancing the understanding of hypersomnia and identifying novel therapeutics that are improving outcomes.

Hypersomnia Subtypes and Prevalence

The central disorder of hypersomnia includes narcolepsy and idiopathic hypersomnia (IH). With a global mean prevalence of between 25 and 50 per 100,000, more is known about narcolepsy and its treatment. IH has a prevalence of 2 to 10.3 per 100,000, and its causes are not as well understood. Whereas symptoms of narcolepsy can include sudden sleep attacks, cataplexy and hypnagogic hallucinations, IH is characterized by excessive daytime sleepiness, difficulty waking and unrefreshing sleep. Both subtypes require clinical assessment and a sleep study to confirm diagnosis. 

Identifying the Trigger

When sleep specialists began seeing an uptick in childhood narcolepsy following the 2009 H1N1 outbreak, Dr. Ibrahim joined colleagues around the nation in forming an early-onset narcolepsy working group of the Sleep Research Network. In 2022, the team published a multicenter retrospective in SLEEP, the official journal of the Sleep Research Society. 

“While the mechanisms underlying the association between H1N1 infection and pediatric narcolepsy are still unclear, several studies suggest that an environmental trigger or immune process affects the hypocretin-related neurons in the hypothalamus, which causes sleep-wake problems,” Dr. Ibrahim says. “Hypocretin is involved in the flip-flop switch that maintains sleep and wake; when absent, patients can have unpredictable sleepiness and wakefulness throughout the 24-hour cycle.” 

Hypocretin agonists awaiting clinical trials are showing promise for future treatment, but there is no current intervention to preserve the hypothalamus. “Most people are not diagnosed with narcolepsy until months or years after the trigger,” Dr. Ibrahim says. “There is no way to prevent the condition without identifiers, which will require additional basic science research.”

CATNAP® Pediatric Narcolepsy Registry

University Hospitals and Dr. Ibrahim also participated in the CATNAP® Pediatric Narcolepsy Registry of patients under age 18. A project of Wake Up Narcolepsy, the initiative was a national multicenter retrospective/prospective, longitudinal pediatric narcolepsy registry. “It became clear at national meetings that there was a need for a national registry,” Dr. Ibrahim says. “CATNAP was the first of its kind and has enabled us to collect crucial narcolepsy data since 2020.”

Medication and Dosing Improvements

Dr. Ibrahim participated in the RESTORE trial, which assessed once-nightly dosing of extended-release sodium oxybate (LUMRYZ™) vs. traditional twice-nightly dosing of an immediate-release formulation. The study was published in Sleep Medicine X in 2024. “FDA approval of once-nightly dosing of LUMRYZ for patients ages 7 and older has been a game changer in the treatment of narcolepsy,” she says. “It used to be that we had just a few drugs at the ready for patients with narcolepsy or idiopathic hypersomnia, but there has been an explosion in ongoing clinical trials that are identifying safe and effective options that go beyond traditional stimulants.”

Making a Difference

Over the years, Dr. Ibrahim has evaluated countless patients and heard their stories of pushing through the fog of disordered sleep. One woman had lived with untreated narcolepsy since high school. “This individual had six children and a very supportive husband, but she described her story of embarrassment over falling asleep in public places or being limited in spending time with her children during the day,” Dr. Ibrahim says. “After a lot of past medication failure, we were able to help her with once-nightly oxybate. She was happy to the point of wondering how she survived her life before.” 

Working at University Hospitals Cleveland Medical Center provides Dr. Ibrahim with the resources of an academic medical center to research emerging therapies. She is currently involved in additional clinical trials for narcolepsy and IH drugs. “We get to have a front-row seat and hands-on experience with medications that are coming to market and hear from patients about how they are responding,” she says. “I feel it makes me a better clinician and is rewarding to be able to impact lives in a meaningful way.”

For more information, contact Dr. Ibrahim at Sally.Ibrahim@UHhospitals.org.

Contributing Expert:
Sally Ibrahim, MD
Director, Pediatric Sleep Medicine
University Hospitals Rainbow Babies & Children’s
Associate Program Director, University Hospitals Sleep Medicine Fellowship
University Hospitals Cleveland Medical Center
Associate Professor
Case Western Reserve University School of Medicine