Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 1,050
- 试验地点
- 13
- 主要终点
- Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST)
研究概览
简要总结
First, the investigators plan to use a retrospective analysis to determine the clinical landscape of neurofibromatosis (NF)1-associated malignant peripheral nerve sheath tumor (MPNST) and precursor lesions (e.g., atypical or nodular plexiform neurofibromas). A worldwide database will be established, collecting, in a standardized manner, histologic, immunohistochemical, molecular, radiographic, treatment, and related clinical data from centers worldwide with expertise in these NF1-related cancers. Although retrospective in nature, the resulting data from this registry may reveal previously unanticipated patterns, similar to the INFACT effort outcome. This registry would then allow the acquisition of data associated with MPNST biospecimens collected under associated banks (frozen or paraffin-embedded, germline (or normal tissue DNA) samples, and any previously somatic whole-exome or whole-genome sequencing data for aggregate analyses). Second, the investigators plan to co-register patients to institutional banks in order to prospectively collect MPNST samples for analysis. These patients will be consented in order to collect the above information and for banking of tumor tissue and future studies that include genomic characterization of the tumors.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Other
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- •Any patient diagnosed with an MPNST is eligible for enrollment to this registry provided s/he consents to participate (or consent form his/her parent or legal guardian or legally authorized representative is obtained).
结局指标
主要结局
Radiographic characteristics of malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Future genomic characterization of malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Histologic characteristics of malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Immunohistochemical characteristics of malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Molecular characteristics of malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
Treatment given to patients with malignant peripheral nerve sheath tumor (MPNST)
时间窗: 10 years
-The data collected through this registry will be used to analyze previously unanticipated patterns and prognostic clues about MPNST
次要结局
未报告次要终点
