A Web-based Observational Study of Patient-reported Outcomes in Adults With Narcolepsy
- Conditions
- Narcolepsy
- Registration Number
- NCT02769780
- Lead Sponsor
- Jazz Pharmaceuticals
- 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 Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 1500
- 18 years or older
- Diagnosed with narcolepsy by a doctor
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Descriptive epidemiology of type 1 and type 2 narcolepsy 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
- Secondary Outcome Measures
Name Time Method Medication utilization and treatment outcomes for type 1 and type 2 narcolepsy 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
Trial Locations
- Locations (1)
Jazz Pharmaceuticals
🇺🇸Palo Alto, California, United States