Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
概览
- 阶段
- 不适用
- 干预措施
- 未指定
- 疾病 / 适应症
- Amyotrophic Lateral Sclerosis
- 发起方
- University of Miami
- 入组人数
- 1200
- 试验地点
- 20
- 主要终点
- Using the ALS Toolkit for collecting and using electronic health record data for research purposes
- 状态
- 招募中
- 最后更新
- 上个月
概览
简要总结
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
详细描述
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
研究者
Michael Benatar
Chief, Neuromuscular Division
University of Miami
入排标准
入选标准
- •Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- •Receiving care at a clinical center that uses Epic as its EHR.
- •Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
排除标准
- •Inability to understand English and/or Spanish
结局指标
主要结局
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
时间窗: 12 months