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Validation of Pediatric Narcolepsy Patient Reported Outcomes

Narcolepsy symptoms in children and adolescents extend beyond sleepiness alone. Narcolepsy symptoms commonly affect academic function, social relationship, mood, and sleep. In order to develop an outcomes scale that reflects values and experiences of kids with pediatric narcolepsy, we are testing a survey among kids 9-17 years with confirmed narcolepsy diagnosis. Participation requires permitting confirmation of diagnosis and completion of online surveys. As a thank you, participants completing surveys will be given a $50 gift card. More information about participating in this study can be found here: Link to Flyer

Understanding Social and Relationship Health in Adolescents with Narcolepsy

Narcolepsy is a rare, chronic neurologic condition that typically begins during adolescence and young adulthood. The purpose of this study is to gain a better understanding of the impact of narcolepsy on social relationships during this critical period of social development. More information about participating in this study can be found here: Link to Flyer

Understanding the Cognitive and Cardiovascular Effects of Narcolepsy — participants needed

  • Description: Research has shown that sleep disturbances can contribute to both cognitive problems and hypertension. We are studying the effects of sleep fragmentation on cognitive and cardiovascular outcomes in kids/adolescents with narcolepsy and healthy controls. Inclusion Criteria: Currently, we are looking for children ages 8-25 years of age who are diagnosed with narcolepsy type 1 as well as healthy control participants with no sleep or medical disorders.
    • What is needed: This study requires 2 sessions of IQ testing (one at home through Skype and one in-person), wearing a wrist watch device for 1 week including on the study night to measure sleep/wake and autonomic activity, completion of questionnaires, an overnight sleep study at Boston Children’s Hospital, memory and emotion tests before and after the sleep study, and blood pressure monitoring before/after the study. Last, a single blood draw is required upon awakening in the morning.
    • As a thank you, the participant receives $250.
  • If you are interested in participating in this study, please email NeuroSleepResearch-dl@childrens.harvard.edu for more information.