NCT05315232已完成不适用
Glanzmanns 360. The Lived Experience of People With Glanzmanns.
Haemnet1 个研究点 分布在 1 个国家目标入组 122 人开始时间: 2022年4月27日最近更新:
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 122
- 试验地点
- 1
- 主要终点
- to understand the impact of GT on quality of life of affected individuals and their families.
研究概览
简要总结
To understand the lived experiences of people with Glanzmanns Thrombasthenia
详细描述
A qualitative study of people with Glanzmanns Thrombasthenia including an on-line survey, qualitative in-depth interviews and bleed diary completion.
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
- 0 Years 至 100 Years（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Clinical diagnosis of congenital (inherited) Glanzmanns Thrombasthenia
排除标准
- •Acquired Glanzmanns Thrombasthenia
结局指标
主要结局
to understand the impact of GT on quality of life of affected individuals and their families.
时间窗: one year
Incidence of reported impact of GT on daily life using validated questionnaires EQ5D, MIQ, PHQ9, Rosenbergs self esteem scale.
次要结局
- Identify levels of acceptability of current treatments and management approaches(one year)
- Identify areas of unmet need among people with GT(one year)
研究者
研究点 (1)
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