A Web-based Observational Study of Patient-reported Outcomes in Adults With Narcolepsy
概览
- 阶段
- 不适用
- 干预措施
- 未指定
- 疾病 / 适应症
- Narcolepsy
- 发起方
- Jazz Pharmaceuticals
- 入组人数
- 1500
- 试验地点
- 1
- 主要终点
- Descriptive epidemiology of type 1 and type 2 narcolepsy
- 状态
- 已完成
- 最后更新
- 4年前
概览
简要总结
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
研究者
入排标准
入选标准
- •18 years or older
- •Diagnosed with narcolepsy by a doctor
排除标准
- 未提供
结局指标
主要结局
Descriptive epidemiology of type 1 and type 2 narcolepsy
时间窗: 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
次要结局
- Medication utilization and treatment outcomes for type 1 and type 2 narcolepsy(Participants complete a survey every 6 months for 3 years after enrollment)