Patient Data and Sample Collection and Distribution

患者数据和样本采集和分发

• 批准号: 7118391
• 负责人: LOUISE C STRONG
• 金额: $ 27.6万
• 依托单位: UNIVERSITY OF TX MD ANDERSON CAN CTR
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-04-01 至 2011-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7118391
• 关键词: Li Fraumeni syndrome; Wilms' tumor; cancer risk; data management; family genetics; gene mutation; genetic counseling; histopathology; human genetic material tag; human subject; medical outreach /case finding; neoplasm /cancer education; neoplasm /cancer genetics; patient /disease registry; pediatric neoplasm /cancer; sample collection; tissue resource /registry

This core facility provides the essential interface with the patients and family members who are critical to the success of each of the research projects. It is the responsibility of this core to provide all the relevant clinical data, biologic specimens, and systematic pathology review to the individual research projects. This core has also developed a psychsocial study that provides educational materials and genetic counseling to participants, with a measure of the effectiveness of the educational intervention. Interventions such as this may be effective as an initial outreach and educational method for families considering genetic testing for Li Fraumeni Syndrome, and may improve their knowledge and psychological outcomes.

这一核心设施为危重病人及其家属提供了必要的接口 每个研究项目的成功。这个核心的责任是提供所有的 相关的临床数据、生物标本和系统病理学综述 项目该核心还开发了一项心理社会研究，提供教育材料， 对参与者进行遗传咨询，并衡量教育干预的有效性。 此类干预措施作为家庭的初步外展和教育方法可能是有效的 考虑对Li Fraumeni综合征进行基因检测，并可能提高他们的知识， 心理后果。