Establishment of an International DIPG Registry

弥漫性脑桥内胶质瘤（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。目前还没有有效的化疗方案。这些病变的生物学特性知之甚少，因为它们通常不进行活检，手术切除是不可能的，因为它们的位置。我们正在建立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库，并与患者分子数据的生物信息学知识库相关联。 这是一个新项目，目前正在开发中。计划进行两项初步研究。

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 are establishing 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. This is a new project, currently under development. Two initial studies are planned.