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

NCT ID: NCT02769780

Last Updated: 2022-04-05

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

1500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-07-08

Study Completion Date

2021-08-09

Brief Summary

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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

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Conditions

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Narcolepsy

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* 18 years or older
* Diagnosed with narcolepsy by a doctor
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Invitae Corporation

INDUSTRY

Sponsor Role collaborator

Wake Up Narcolepsy

UNKNOWN

Sponsor Role collaborator

Narcolepsy Network

UNKNOWN

Sponsor Role collaborator

ICON plc

INDUSTRY

Sponsor Role collaborator

Jazz Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Danielle Hyman, PhD

Role: STUDY_DIRECTOR

Jazz Pharmaceuticals

JeanPierre Coaquira, MPH

Role: PRINCIPAL_INVESTIGATOR

Jazz Pharmaceuticals

Locations

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Jazz Pharmaceuticals

Palo Alto, California, United States

Site Status

Countries

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United States

References

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Thorpy MJ, Ohayon MM, Carls G, Black J, Pasta DJ, Hyman DL, Villa KF. Assessing the impact of sodium oxybate treatment on functioning, productivity, and health-related quality of life in patients with narcolepsy: findings from the Nexus Narcolepsy Registry (waves 1-4). Sleep Med. 2021 Aug;84:380-388. doi: 10.1016/j.sleep.2021.06.010. Epub 2021 Jun 19.

Reference Type DERIVED
PMID: 34247126 (View on PubMed)

Other Identifiers

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Nexus Narcolepsy Registry

Identifier Type: -

Identifier Source: org_study_id

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