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

April 28th, 2020

Currently, there is no tool to assess the symptoms of narcolepsy that most significantly impact the daily functioning of children with narcolepsy.  This study hopes to develop a clinical tool that 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 online, 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.

To be eligible to participate, patients must be 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 [email protected].

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Date Created: April 28th, 2020
Last Updated: December 21st, 2023