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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT02769780

Enrollment

1500

Registered

2016-05-12

Start date

2015-07-08

Completion date

2021-08-09

Last updated

2022-04-05

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Interventions

None listed

Study design

Observational model

CASE_ONLY

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

Inclusion criteria

* 18 years or older * Diagnosed with narcolepsy by a doctor

Design outcomes

Primary

Measure	Time frame	Description
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

Measure	Time frame	Description
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

Countries

United States

Outcome results