NCT02568202已完成不适用
Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S)
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 449
- 试验地点
- 1
- 主要终点
- An online survey of Prevalence and characteristics of adults with hemophilia B
研究概览
简要总结
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).
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —(Adult, Older Adult)
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
An online survey of Prevalence and characteristics of adults with hemophilia B
时间窗: At day 0
An online survey of Prevalence and characteristics of children with hemophilia B (and their parents)
时间窗: At day 0
An online survey of Prevalence of psychosocial and other comorbidities in patients with hemophilia B
时间窗: At day 0
次要结局
- 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)
研究者
研究点 (1)
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