NCT03161171已完成不适用
Behavioral Challenges in Children With Mucopolysaccharidosis Type I-III and Parental Coping Strategies
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 34
- 试验地点
- 1
- 主要终点
- Coping strategies for challenging behavior and for family burden in mucopolysaccharidosis type I-III
研究概览
简要总结
The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies
详细描述
This is a prospective, cross-sectional, observational study quantitatively assessing
- challenging behavior in children with MPS, an orphan, progressive, neurodegenerative metabolic disorder, and
- parental coping strategies for this challenging behavior.
Patients registered at the German Society for Mucopolysacchardoses giving written informed consent are eligible. The study is based on questionnaires. IRB approval was obtained.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Prospective
入排标准
- 年龄范围
- — 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Diagnosis of mucopolysaccharidosis type I, II or III
- •Written informed consent
- •Patient is registered at the German Society for Mucopolysaccharidosis
排除标准
- •Patient / Family does not give written informed consent.
结局指标
主要结局
Coping strategies for challenging behavior and for family burden in mucopolysaccharidosis type I-III
时间窗: 10 minutes
assessed by visual analogue scale
次要结局
- Quantity of behavioral abnormalities in children with mucopolysaccharidosis type I-III(10 minutes)
- Intensity of behavioral abnormalities in children with mucopolysaccharidosis type I-III(10 minutes)
- Psychosocial burden in families with mucopolysaccharidosis type I-III(10 minutes)
研究者
Markus Ries, MD PhD MHSc FCP
Professor
University Hospital Heidelberg
研究点 (1)
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