Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep-related issue, sleep challenges not only affect the individual with PWS but the entire family. The PWS Global Registry has gathered useful survey data on sleep issues in PWS.
Sleep Survey Responses
As of December 2025, 921 respondents have completed the sleep survey in the Global PWS registry. Of those respondents, 70% report at least one sleep-related issue. The most prevalent challenge is excessive daytime sleepiness (58%), followed by early waking (56%), lack of REM (14%), narcolepsy (13%), and cataplexy (10%).
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Sleep Apnea and PWS
The majority of respondents (86%) report that their loved one with PWS has had a sleep study. Of those who have completed a sleep study, 61% have some type of sleep apnea at some point. The most common types of apnea are obstructive (22%), or a combination of obstructive and central (16%). The prevalence of apnea in patients with PWS strongly supports that individuals with PWS should undergo screening by a sleep study.
Make sure your data is included in future registry highlights!
Enroll in the PWS Registry and update your surveys today. Your responses fuel the data that researchers and clinicians rely on to improve care and move promising treatments forward.
