The Pediatric Hypersomnolence Survey (PHS) is designed to improve early identification of narcolepsy (type 1 and type 2) and idiopathic hypersomnia (IH) among children and adolescents ages 8 to 18 years who are in need of further evaluation, testing, and diagnosis.
Developed and validated in 2021 by a group of researchers led by Kiran Maski, MD, MPH, department of neurology at Boston Children’s Hospital, the Pediatric Hypersomnolence Survey is a tool that seeks the participation of clinical health providers, school professionals, and concerned family members.
The Coverys Community Healthcare Foundation funded the validation of the Pediatric Hypersomnolence Survey through Wake Up Narcolepsy (WUN), a nonprofit organization dedicated to fostering narcolepsy awareness, education, and research toward improved treatments and a cure. The American Academy of Sleep Medicine also provided grant funding for this project.
“I am incredibly grateful for the support of Wake Up Narcolepsy, our wonderful research participants, and our dedicated research staff that make this work possible,” says Maski, assistant professor of neurology, Harvard Medical School, Boston Children’s Hospital, in a release. “We hope this survey can help triage kids and teens with narcolepsy or idiopathic hypersomnia more directly to sleep medicine providers for timely diagnosis.”
Monica Gow, founder and executive director, Wake Up Narcolepsy, says in a release, “It often takes 6 to 8 years or longer to accurately diagnose a person with narcolepsy. The [Pediatric Hypersomnolence Survey] is a critical new screening tool that we hope will aid in shortening the diagnosis period for children suffering with narcolepsy.”
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