Glioma Developmental and HyperActive Ras Tumor (DHART) Board
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 50
- 试验地点
- 14
- 主要终点
- Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma
研究概览
简要总结
This study will collect medical records, scan results, and complete surveys to create a registry about people with a neurofibromatosis type 1-associated brain tumor (NF1-associated glioma). A registry is a collection of health information about individuals, and it is usually focused on a specific diagnosis or condition.
This registry study will help the researchers learn more about the diagnosis, treatment, and quality of life of people with NF1-associated glioma. The researchers want to understand what happens as a result of different treatments for NF1-associated glioma and how these treatments and the disease itself affect people's lives over a period of time. Information collected during this study could affect how doctors diagnose, test, and treat NF1-associated glioma, and the study could help future patients with this type of cancer.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
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
- •Clinical diagnosis that meets NIH criteria for NF1 disease by either 1) documented clinical record establishing NF1 or 2) self-reported with supported documentation upon medical record collection.
- •Willing to have historical and future NF1 related health records sent to registry for review.
- •Radiologic or pathologically confirmed glioma.
- •Individuals ≥18 years of age on the date of informed consent.
排除标准
- •Unwillingness to sign informed consent.
- •No proficiency in English or Spanish as determined by the Investigator.
结局指标
主要结局
Registry of patients with Neurofibromatosis Type 1 (NF1) associated glioma
时间窗: 5 years
The overarching goal of the registry is to collect baseline and follow-up 1) clinical and 2) imaging data to have a centralized and living repository of information about the adult glioma NF1 patient population.
次要结局
未报告次要终点