Multiple System Atrophy Multidisciplinary Clinic
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 200
- 试验地点
- 2
- 主要终点
- Multiple System Atrophy-Quality of Life (MSA-QoL)
研究概览
简要总结
This is a prospective cohort study to examine the disease burden of multiple system atrophy and the impact of multidisciplinary care on quality of life and caregiver burden. Data will be collected through valid rating scales completed by patients and caregivers at home or in the MSA clinic.
详细描述
Study Procedures:
Participants and caregivers will attend a multidisciplinary MSA clinic one day every four months. In addition to the standard of care, they will be asked to complete both online and paper questionnaires, including the following:
- UMSARS (Unified MSA Rating Scale)
- MSA QOL
- CES-D
- OHQ
- Compass-31
- BIC
- UPDRS
- SARA
- MDS Scale
- CGI
- MoCA
Participants will be part of the study as long as they are a patient of the MSA clinic, and will be contacted for follow-up information up to five years.
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
- •Subject must be a patient in the UT Southwestern MSA clinic and be able to attend the multidisciplinary clinic every 4 months
- •Patients with possible or probable MSA based on established criteria
- •Subjects must be 18 years or older
排除标准
- •Patients that are unable to give consent
- •Minor patients (younger than age 18)
- •Non-English speaking patients
- •Subjects that are diagnosed with dementia
结局指标
主要结局
Multiple System Atrophy-Quality of Life (MSA-QoL)
时间窗: at 5 year evaluation
The disease burden of MSA and impact of multidisciplinary care on the quality of life of patients as measured by the MSA-Quality of Life (QOL) questionnaire completed every four months by the patients. The scale measures how MSA affects a person's quality of life in day to day activities. The scale ranges from No problem to Extreme Problem. The More Extreme Problem sections selected the more their quality of life is affected by the disease.
次要结局
- Unified Multiple System Atrophy Rating Scale (UMSARS)(at 5 year evaluation)
- Caregiver Burden Index/ The Zarit Burden Interview(at 5 year evaluation)
研究者
Steven Vernino MD PhD
PROFESSOR
University of Texas Southwestern Medical Center