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| Name | Class |
|---|---|
| Invitae Corporation | INDUSTRY |
| Wake Up Narcolepsy | UNKNOWN |
| Narcolepsy Network | UNKNOWN |
| ICON plc |
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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
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| Measure | Description | Time Frame |
|---|---|---|
| Descriptive epidemiology of type 1 and type 2 narcolepsy | 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 | Participants complete a survey every 6 months for 3 years after enrollment |
| Measure | Description | Time Frame |
|---|---|---|
| Medication utilization and treatment outcomes for type 1 and type 2 narcolepsy | 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 | Participants complete a survey every 6 months for 3 years after enrollment |
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Inclusion Criteria:
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All adult patients with narcolepsy
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| Name | Affiliation | Role |
|---|---|---|
| Danielle Hyman, PhD | Jazz Pharmaceuticals | Study Director |
| JeanPierre Coaquira, MPH | Jazz Pharmaceuticals | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Jazz Pharmaceuticals | Palo Alto | California | 94304 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 34247126 | Derived | 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. |
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| ID | Term |
|---|---|
| D009290 | Narcolepsy |
| ID | Term |
|---|---|
| D006970 | Disorders of Excessive Somnolence |
| D020919 | Sleep Disorders, Intrinsic |
| D020920 | Dyssomnias |
| D012893 | Sleep Wake Disorders |
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| INDUSTRY |
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| D009422 | Nervous System Diseases |
| D001523 | Mental Disorders |