Establishment of an International DIPG Registry

弥漫性桥脑胶质瘤(DIPG)占儿童脑干胶质瘤的70-80%。每年大约有300名儿童患上脑干胶质瘤。DIPGs患者的预后仍然很差，中位生存期不到1年，30多年来生存期没有任何改善。目前还没有有效的化疗方案。人们对这些病变的生物学知之甚少，因为它们通常不进行活检，而且考虑到它们的位置，手术切除是不可能的。我们已经建立了国际弥漫性固有桥脑胶质瘤登记处，以提供一个全面的临床、放射和病理数据数据库，该数据库链接到患者分子数据的生物信息库。计划进行两项初步研究。该网站现已登陆http://dipgregistry.org/。

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/