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)
Loading locations...
相似试验
已完成
不适用
Observational Patient Diary Study of Treatment Doses for Patients With Haemophilia With Inhibitors to Factors VIII and IXCongenital Bleeding DisorderHaemophilia A With InhibitorsHaemophilia B With InhibitorsNCT00710619Novo Nordisk A/S52
已完成
不适用
Females With Severe or Moderate Hemophilia A or B: an International Multi-center StudyHemophilia AHemophilia BNCT00936312Weill Medical College of Cornell University200
已完成
不适用
Obtain Real World Insights of Acquired Hemophilia A Patients in JapaJPRN-UMIN000043479Chugai Pharmaceutical Co., Ltd.338
已完成
不适用
ATHN 2: Factor Switching StudyHemophiliaNCT02546622American Thrombosis and Hemostasis Network310
终止
不适用
Assessing Physician and Hemophilia A Patient Reasons and Expectations for Switching Treatment to Kovaltry & Jivi: A Nested Study Within an Existing RegistryHemophilia ANCT03603275Bayer3