Children/Adolescents Needed to Participate in a Survey Study!
Currently there is no clinical tool to assess the broad symptoms of pediatric narcolepsy and their impact on daily functioning. We are a group of researchers from different academic hospitals (Boston Children’s Hospital, Stanford University, Geisinger Medical Center, The Hospital for Sick Children, and National Jewish Health) testing a pediatric narcolepsy patient reported outcomes tool to assess pediatric narcolepsy symptoms and their effect on daily functioning and quality of life. Our goal is to develop a clinical survey that can improve the care of pediatric narcolepsy.
WHO IS ELIGIBLE?
Children between the ages of 9-17 years AND one parent/guardian
A diagnosis of narcolepsy OR mild to moderate obstructive sleep apnea (obstructive AHI 1-15/hour)
Diagnosis must be verified by a signed letter from physician in order to participate
PARTICIPATION DETAILS
If you sign up you will receive an email containing a link to complete HIPAA compliant online surveys about narcolepsy symptoms, quality of life, and daily function. Participation should take no more than 30 minutes.
One week later, participants will receive another email with a link to complete a 10-minute follow up survey
As a thank you for completing all surveys, we will send you a $50 gift card
INTERESTED?
If you would like more about the study or are interested in participating please call the
Neurology Sleep Research team at 617-919-6212 or email us at
NeuroSleepResearch-dl@childrens.harvard.edu
