Apr 07 2020
Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS)

Share your experience living with narcolepsy!

Narcolepsy is a chronic neurologic condition that tends to occur most frequently during childhood and adolescence. Currently, there is no tool to assess the symptoms of narcolepsy that most significantly impact daily functioning of children with narcolepsy. We are conducting a study to develop a clinical tool health care providers can use to assess pediatric narcolepsy symptoms.

Pediatric patients with narcolepsy and their parent/guardian are invited to take part in a 90 minute on-line, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. As a thank you for participating in the focus group, you will receive a $50 gift card.

Who is eligible for this study?

• Patients between the ages of 8-12 years with a diagnosis of narcolepsy AND one parent/guardian
• Participants must be able to understand the purpose of the study

If you would like more information on study requirements, compensation, or eligibility, please call the Neurology Sleep Research team at 617-919-6212 or email us at  NeuroSleepResearch-dl@childrens.harvard.edu