NCT05955014招募中不适用
Data Collection Protocol for Patients With Von Hippel Lindau Disease
适应症
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 125
- 试验地点
- 2
- 主要终点
- Progression-free survival (PFS)
研究概览
简要总结
To collect information from patients with vHL disease. Information collected will include data on the status of the disease, any surgeries or therapies patients have received for vHL disease, and quality of life.
详细描述
Primary Objectives:
- Obtain prospective and retrospective data on lesion development, surgical history and systemic therapy use in patients with vHL disease
- Assess genotype-phenotype correlation between VHL mutation type and patterns of lesion development
- Assess genotype-phenotype correlation for response to belzutifan in an organ-specific manner
Secondary Objectives:
--Obtain quality of life data in patients with vHL disease
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
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Presence of genetic confirmation or clinical criteria consistent with vHL disease.
- •Ability to understand and the willingness to sign a written informed consent document.
排除标准
- •Patients with psychiatric illness/social situations that would limit compliance with study requirements.
结局指标
主要结局
Progression-free survival (PFS)
时间窗: through study completion; an average of 1 year
次要结局
未报告次要终点
研究者
研究点 (2)
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