Clinical Trial: A Web-based Observational Study of Patient-reported Outcomes in Adults With Narcolepsy

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]

Official Title: A Web-based Observational Study of Patient-reported Outcomes in Adults With Narcolepsy

Brief Summary:

Nexus is a collaboration between academic institutions, advocacy and industry to answer important questions about narcolepsy. It is a web-based observational study of patient-reported outcomes in adult patients with narcolepsy, with follow-up every six months.

Nexus website: www.narcolepsyregistry.com


Detailed Summary:
Sponsor: Jazz Pharmaceuticals

Current Primary Outcome: Descriptive epidemiology of type 1 and type 2 narcolepsy [ Time Frame: Participants complete a survey every 6 months for 3 years after enrollment ]

Assessments include disease/diagnosis characteristics, disease/symptom characteristics, health-related quality of life (HRQoL), functioning, work productivity, resource utilization, and comorbidity burden at the time of enrollment and their progression through the course of the study


Original Primary Outcome: Same as current

Current Secondary Outcome: Medication utilization and treatment outcomes for type 1 and type 2 narcolepsy [ Time Frame: Participants complete a survey every 6 months for 3 years after enrollment ]

Assessments include: Medication use, non-pharmacologic disease management, symptom relief, quality of life (QoL), functionality and productivity associated with varying treatment regimens at baseline and their change throughout the course of the study


Original Secondary Outcome: Same as current

Information By: Jazz Pharmaceuticals

Dates:
Date Received: March 9, 2016
Date Started: June 2015
Date Completion:
Last Updated: May 11, 2016
Last Verified: May 2016