The International DIPG Registry

弥漫性桥脑胶质瘤（DIPG）占儿童脑干胶质瘤的70-80%。在北美，每年大约有300名儿童患上脑干神经胶质瘤。DIPG患者的预后仍然很差，中位生存期不到1年，并且在30多年的时间里没有实现生存率的改善。目前没有有效的化疗方案，对这些病变的生物学知之甚少，因为它们通常不进行活检，并且鉴于其位置，手术切除是不可能的。我们已经建立了一个国际弥漫性内在脑桥胶质瘤登记处，以提供一个全面的临床，放射学和病理学数据的数据库连接到一个生物信息学知识库的分子数据的患者。计划进行两项初步研究。该网站现在可在http://dipgregistry.org/上查阅。该项目因PI离职而停止。

Diffuse intrinsic pontine gliomas (DIPG) comprise 70-80% of all brainstem gliomas in children. Approximately 300 children in North America 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/. This project halted due to the PI departure.