The Co-Op @ HeartWorks
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 500
- 试验地点
- 1
- 主要终点
- Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease
研究概览
简要总结
This protocol is a research study involving human subjects diagnosed with Congenital Heart Defects/Disease (CHD). The Co-Op @ HeartWorks is a cooperative between the research platform at HeartWorks and members of the CHD community. Individuals choosing to participate will be referred to as 'members' of the co-op. This study aims to create a database of members medical journey data to inform future clinical innovation and design of clinical trials which address the needs of the members. The knowledge generated from this study will help advance the care of CHD patients through the deliberate action of The Co-Op @ HeartWorks members. Unlike a traditional disease registry, the members of The Co-Op @ HeartWorks will actively inform and contribute to the future studies affecting their health.
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
- 0 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Adult with a congenital heart defects/disease
- •Caregiver of a minor with a congenital heart defect/disease
- •Authorized family member of a now deceased person with congenital heart defect/disease
排除标准
- •- Not having a congenital heart defect/disease
结局指标
主要结局
Registry of individuals with CHD to plan and recruit for future interventional trials in Congenital Heart Defects/Disease
时间窗: 25 years
次要结局
未报告次要终点