International Registry of Congenital Portosystemic Shunts (IRCPSS) - A Multi-centre, Retrospective and Prospective Registry of Neonates, Children and Adults With Congenital Portosystemic Shunts
试验速览
- 阶段
- 不适用
- 状态
- Enrolling By Invitation
- 发起方
- 入组人数
- 500
- 试验地点
- 26
- 主要终点
- Numbers of patients with spontaneous shunt closure
研究概览
简要总结
Congenital Portosystemic Shunt (CPSS) is a rare condition important by the multiplicity and severity of associated complications.
CPSS is venous anomaly in which blood coming from the intestines only partially passes through the liver.
This leads to the accumulation of potentially toxic factors that cause systemic effects.
Complications vary among the individuals, and currently, it is challenging to predict which individuals will develop severe complications.
The IRCPSS registry is established with the aim of centralizing detailed clinical follow-up and biological information from participants around the world who suffer from Congenital Portosystemic Shunt (CPSS). A multidisciplinary consortium of experts is collaborating to enhance our understanding of the prevalence, natural history, individual risks, and physiopathology of the disease through the IRCPSS registry.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Other
入排标准
- 年龄范围
- 1 Day 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Individual with CPSS
排除标准
- •Secondary shunt without evidence of congenital shunt
结局指标
主要结局
Numbers of patients with spontaneous shunt closure
时间窗: 3; 6; 12; 24 months
Number of patients developing one or more complications
时间窗: 5; 10; 20 years
Number of patients undergoing preemptive closure
时间窗: 6; 12; 24 months
次要结局
未报告次要终点
研究者
Prof. Valérie Mc Lin
Prof. Dr. med.
University Hospital, Geneva