Symptoms and Outcome Measures for Upper- Limb Function in Myotonic Dystrophy Type 1
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 89
- 试验地点
- 3
- 主要终点
- Nine Hole Peg Test
研究概览
简要总结
Myotonic Dystrophy type 1 (DM1) is a multisystem disease that causes muscle weakness and myotonia. As a result upper limb function might become impaired. In this study we will examine patients with DM1 and record their upper limb function. We will will use a battery of patient reported outcomes (PROs) and Outcome measures (OMs) in order to evalute which ones are suitable for use in clinical practise and research studies.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
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
- •Genetically confirmed Myotonic Dystrophy type 1
排除标准
- •Unable to answer or understand questionnaires due to language barriers or cognitive status
- •Unable to perform functional tests
结局指标
主要结局
Nine Hole Peg Test
时间窗: 1-3 minutes
Fine motor function test
ABILHAND Questionnaire
时间窗: 5 min
A measure of manual ability for adults with upper limb impairments. The scale measures a person's ability to manage daily activities that require the use of the upper limbs, whatever the strategies involved. Consists of 22 questions (18 to be answered by adults). The categories are easy, difficult or unable to perform. The querionnaire gives a sum score where higher score equals better function.Score from 0 to 36
ACTIVLIM Questionnaire
时间窗: 5 min
A measure of activity limitations for patients with upper and/or lower limb impairments. The scale measures a patient's ability to perform daily activities requiring the use of the upper and/or the lower limbs, whatever the strategies involved. Consists of 22 questions (18 to be answered by adults). The categories are easy, difficult or unable to perform. The questionnaire gives a sum score where higher score equals better function. Score fror 0 to 36
Motor Function Measures (MFM)
时间窗: 30-45 minutes
Functional test
Myogrip/Dynamometer
时间窗: 1-3 minutes
Measures hand strenght
Myopinch
时间窗: 1-3 minutes
Measures finger strenght
次要结局
- Lung function test(10 minutes)
- Trunk Impairment Scale - modified Norwegian version(8-15 minutes)
- Four Square Step Test(1-3 minutes)
- PROMIS29(5-10 minutes)
- Starkstein Apathy Scale(5 minutes)
- Montreal Cognitive Assessment (MoCA)(10 minutes)
研究者
Kristin Ørstavik
PI
Oslo University Hospital