Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S)

Study Overview
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Brief Summary
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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).

Official Title
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Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S)

Conditions
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Haemostasis, Congenital Bleeding Disorder, Haemophilia B

Intervention / Treatment
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* Other: No treatment given


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Adults aged below or equal to 18 years with hemophilia B (any severity, with or without inhibitors) Caregivers of children currently aged below 18 years with hemophilia B (any severity, with or without inhibitors) Subjects must have access to the internet, either at home or at a location convenient to them Provision of informed consent before the start of any survey-related activities Exclusion Criteria: Inability to understand and comply with written instructions in English Previous completion of the B-HERO-S study with receipt of compensation Mental incapacity, unwillingness or language barriers precluding adequate understanding or cooperation

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Survey<br> | Other: No treatment given<br>* This is an online web-based cross-sectional survey in which participants will complete one of two questionnaires. There will be no treatment.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | 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 | 

Secondary Outcome Measures

| Outcome Measure | 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 | 
| 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 |