Establishment of an International DIPG Registry

建立国际 DIPG 登记处

• 批准号: 8763499
• 负责人: Katherine e Warren
• 金额: $ 5.14万
• 依托单位: DIVISION OF BASIC SCIENCES - NCI
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/8763499
• 关键词: Bioinformatics; Biology; Biopsy; Brain Stem Glioma; Child; Classification; Clinical; Clinical/Radiologic; Collaborations; Data; Databases; Diagnosis; Diffuse; Enrollment; Excision; Glioma; International; Lead; Lesion; Link; Location; Molecular; Operative Surgical Procedures; Pathologic; Patients; Pontine structure; Recruitment Activity; Regimen; Registries; Research Personnel; effective therapy; follow-up; outcome forecast; repository; research study; web site

Diffuse intrinsic pontine gliomas (DIPG) comprise 70-80% of all brainstem gliomas in children. Approximately 300 children develop brainstem gliomas per year. Prognosis for patients with DIPGs remains dismal with a median survival of less than 1 year and no improvement in survival has been realized in more than three decades. No effective chemotherapeutic regimens are currently available.Little is known about the biology of these lesions because they are typically not biopsied and surgical resection is impossible given their location. We have established an International Diffuse Intrinsic Pontine Glioma Registry to provide a comprehensive database of clinical, radiologic and pathologic data linked to a bioinformatics repository of molecular data of patients. Two initial studies are planned. The website is now available at http://dipgregistry.org/

弥漫性内在脑桥胶质瘤 (DIPG) 占儿童所有脑干胶质瘤的 70-80%。每年大约有 300 名儿童患上脑干胶质瘤。 DIPG 患者的预后仍然很差，中位生存期不到 1 年，而且三十多年来生存率没有改善。目前尚无有效的化疗方案。人们对这些病变的生物学知之甚少，因为它们通常不会进行活检，而且鉴于其位置，不可能进行手术切除。我们建立了国际弥漫性内源性脑桥胶质瘤登记处，提供与患者分子数据生物信息学存储库相关的临床、放射学和病理数据的综合数据库。计划进行两项初步研究。该网站现已访问 http://dipregistry.org/