Nov 11 2021
Boston Children’s Hospital Narcolepsy Research Study for Kids Ages 9 to 17

Please review the below information provided by Boston Children’s Hospital

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. Their goal is to develop a clinical survey that can improve the care of pediatric narcolepsy.

Eligibility

• Children and adolescents with narcolepsy between the ages of 9-17 years
• Narcolepsy diagnosis must be verified by a signed letter from physician in order to participate
• Participants must be able to understand the purpose of the study

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, some 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

How to Apply

• If you would like more about the study or are interested in participating please call the Neurology Sleep Research team at 617-919-212 or send to Boston Children’s an email.