NCT02218567终止不适用
Behavioural Problems in Huntington Disease : Analysis and Enhancement of Caregiver and Patient Experience
University Hospital, Angers2 个研究点 分布在 1 个国家目标入组 12 人开始时间: 2014年6月1日最近更新:
适应症
试验速览
- 阶段
- 不适用
- 状态
- 终止
- 发起方
- 入组人数
- 12
- 试验地点
- 2
- 主要终点
- The Huntington's Disease health-related Quality of Life questionnaire
研究概览
简要总结
The study hypothesis is that caregivers experience allows them to develop a lot of knowledge and know-how about behavioural problems in Huntington Disease and its consequences. The purpose of this study is to collect, describe and analyse caregivers experience in order to find and enhance their knowledge related to the adaptation to behavioural problems of Huntington Disease patients.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •For patients:
- •Patients with Huntington Disease declared
- •Huntington Disease diagnosed with abnormal number of CAG repeats: 38 < nucleotide expansion (CAG)
- •Total Functional Capacity ≥ 7
- •Patients living with a caregiver
- •Aged 18 years and above
- •Subject gave its written consent
- •For caregivers :
- •No risk of caregiver having Huntington disease
- •Aged 18 years and above
- •Subject gave its written consent
排除标准
- •For patients:
- •Patient who do not live with a caregiver
- •No national health insurance affiliation
- •Being under guardianship
- •For caregivers :
- •Caregiver at risk for Huntington Disease
- •No national health insurance affiliation
- •Being under guardianship
结局指标
主要结局
The Huntington's Disease health-related Quality of Life questionnaire
时间窗: Baseline
The primary outcome is to find a list of caregiver competences necessary to prevent and adapt to behavioural problems of Huntington Disease patients.
次要结局
未报告次要终点
研究者
研究点 (2)
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