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OpenTrials
Completed

NCT Number: NCT02769780

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

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

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Key information

Conditions

Narcolepsy Disorders of Excessive Somnolence Dyssomnias Mental Disorders Nervous System Diseases Sleep Disorders, Intrinsic Sleep Wake Disorders

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Jazz Pharmaceuticals

Palo Alto, California, 94304, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Treatment and study plan

Primary outcomes

  1. 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

Secondary outcomes

  1. 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

Sponsors and collaborators

Lead sponsor

Jazz Pharmaceuticals

Industry

Collaborators

  • ICON plc
  • Invitae Corporation
  • Narcolepsy Network
  • Wake Up Narcolepsy

Registry information

Important dates

Study start
2015
Primary completion
2021
Study completion
2021
First posted
May 12, 2016
Registry last updated
Apr 5, 2022

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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