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| ID | Type | Description | Link |
|---|---|---|---|
| U1111-1171-8168 | Other Identifier | WHO |
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This study is conducted in the United States of America (USA). Tha aim of this study is bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S).
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Survey |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No treatment given | Other | This is an online web-based cross-sectional survey in which participants will complete one of two questionnaires. There will be no treatment. |
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| Measure | Description | Time Frame |
|---|---|---|
| An online survey of Prevalence and characteristics of adults with hemophilia B | At day 0 | |
| An online survey of Prevalence and characteristics of children with hemophilia B (and their parents) | At day 0 | |
| An online survey of Prevalence of psychosocial and other comorbidities in patients with hemophilia B | At day 0 |
| Measure | Description | Time Frame |
|---|---|---|
| Percentage of participants reporting difficulty with access to treatment (e.g. factor) | At day 0 | |
| An online survey of Percentage of participants reporting difficulty with access to treatment centers | At day 0 |
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Inclusion Criteria:
Exclusion Criteria:
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This study will investigate adult patients at least 18 years of age with mild-severe hemophilia B and caregivers of children (current age below 18 years) with hemophilia B.
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| Name | Affiliation | Role |
|---|---|---|
| Global Clinical Registry (GCR, 1452) | Novo Nordisk A/S | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Novo Nordisk Clinical Trial Call Center | Plainsboro | New Jersey | 08536 | United States |
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| Label | URL |
|---|---|
| Clinical Trials at Novo Nordisk | View source |
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| ID | Term |
|---|---|
| D002836 | Hemophilia B |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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| Percentage of participants reporting hemophilia interference with employment/education | At day 0 |
| Percentage of participants reporting hemophilia interference with physical activities | At day 0 |
| Percentage of participants reporting hemophilia interference with relationships | At day 0 |
| Health related quality of life: EuroQol | At day 0 |
| Health related quality of life:EQ-5D-5L | At day 0 |
| Health related quality of life: VAS (Visual Analog Scale) | At day 0 |
| Health related quality of life: BPI (Brief Pain Inventory) short form - Pain severity and interference | At day 0 |
| Health related quality of life: HAL (Hemophilia Activities List) | At day 0 |
| Health related quality of life: HemoCAB (Caregiver Hemophilia Burden Scale | At day 0 |
| Drivers of psychosocial impact (e.g. hemophilia severity, age, weight, prior treatment history, education) | At day 0 |
| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D040181 | Genetic Diseases, X-Linked |