Neurofibromatosis Type 1 Patient Registry
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 2,391
- 试验地点
- 1
- 主要终点
- Neurofibromatosis Type 1
研究概览
简要总结
The Neurofibromatosis Type 1 (NF1) Patient Registry Initiative (NPRI) is a web-based registry that asks participants to fill out a 30-minute online questionnaire to collect information about the spectrum of medical and social problems experienced by children and adults with NF1. The information gained from your participation may one day help doctors develop personalized treatments for individuals living with NF1.
We are currently enrolling individuals with NF1 who either (1) HAVE previously been diagnosed with a brain tumor younger than 18 years or (2) HAVE NEVER had a brain tumor. Please note: there is no therapy associated with this study. Individuals may participate in the registry by going to https://nf1registry.wustl.edu/
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 diagnosed by a healthcare provider with Neurofibromatosis Type 1
排除标准
- •Individuals without a healthcare provider diagnosis of Neurofibromatosis Type 1
结局指标
主要结局
Neurofibromatosis Type 1
时间窗: ongoing
次要结局
未报告次要终点