The International DIPG Registry

弥漫性内生性脑桥胶质瘤（DIPG）占儿童脑干胶质瘤的70-80%。北美每年大约有300名儿童患上脑干胶质瘤。dipg患者的预后仍然令人沮丧，中位生存期不到1年，30多年来生存率没有改善。目前尚无有效的化疗方案。对这些病变的生物学知之甚少，因为它们通常没有活检，而且由于它们的位置，手术切除是不可能的。我们已经建立了国际弥漫性内生性脑桥胶质瘤登记处，以提供临床、放射学和病理数据的综合数据库，并与患者分子数据的生物信息学存储库相关联。计划进行两项初步研究。该网站现已登陆http://dipgregistry.org/。由于PI离开，这个项目停止了。

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.