Alpha-1 Foundation Research Registry
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 6,655
- 试验地点
- 1
- 主要终点
- To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency
研究概览
简要总结
The Alpha-1 Foundation Research Registry is a confidential database made up of individuals diagnosed with severe alpha-1 antitrypsin deficiency (Alpha-1) or the carrier state.
详细描述
The Registry was established in 1997 by the Alpha-1 Foundation to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1. Located at the Medical University of South Carolina (MUSC) in Charleston, the Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry operates under the direction of the Alpha-1 Foundation Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, ethical, scientific and Alpha communities. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Other
入排标准
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency or the carrier state
排除标准
- 未提供
结局指标
主要结局
To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency
时间窗: Not limited
次要结局
未报告次要终点
研究者
Charlie Strange
Professor of Pulmonary and Critical Care Medicine
Medical University of South Carolina