Penas-Prado Marta, Wu Jing, Cahill Daniel P, Brat Daniel J, Costello Joseph F, Kluetz Paul G, Cairncross J Gregory, van den Bent Martin, Verhaak Roel G W, Aboud Orwa, Burger Peter, Chang Susan M, Cordova Christine, Huang Raymond Y, Rowe Lindsay S, Taphoorn Martin J B, Gilbert Mark R, Armstrong Terri S
Neuro-Oncology Branch/National Cancer Institute, Bethesda, Maryland.
Department of Neurosurgery, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.
Neurooncol Adv. 2019 Dec 6;2(1):vdz048. doi: 10.1093/noajnl/vdz048. eCollection 2020 Jan-Dec.
Oligodendroglioma is a rare primary central nervous system (CNS) tumor with highly variable outcome and for which therapy is usually not curative. At present, little is known regarding the pathways involved with progression of oligodendrogliomas or optimal biomarkers for stratifying risk. Developing new therapies for this rare cancer is especially challenging. To overcome these challenges, the neuro-oncology community must be particularly innovative, seeking multi-institutional and international collaborations, and establishing partnerships with patients and advocacy groups thereby ensuring that each patient enrolled in a study is as informative as possible.
The mission of the National Cancer Institute's NCI-CONNECT program is to address the challenges and unmet needs in rare CNS cancer research and treatment by connecting patients, health care providers, researchers, and advocacy organizations to work in partnership. On November 19, 2018, the program convened a workshop on oligodendroglioma, one of the 12 rare CNS cancers included in its initial portfolio. The purpose of this workshop was to discuss scientific progress and regulatory challenges in oligodendroglioma research and develop a call to action to advance research and treatment for this cancer.
The recommendations of the workshop include a multifaceted and interrelated approach covering: biology and preclinical models, data sharing and advanced molecular diagnosis and imaging; clinical trial design; and patient outreach and engagement.
The NCI-CONNECT program is well positioned to address challenges in oligodendroglioma care and research in collaboration with other stakeholders and is developing a list of action items for future initiatives.
少突胶质细胞瘤是一种罕见的原发性中枢神经系统（CNS）肿瘤，其预后差异很大，通常无法通过治疗治愈。目前，对于少突胶质细胞瘤进展所涉及的途径或用于风险分层的最佳生物标志物知之甚少。为这种罕见癌症开发新疗法尤其具有挑战性。为了克服这些挑战，神经肿瘤学界必须特别具有创新性，寻求多机构和国际合作，并与患者及倡导团体建立伙伴关系，从而确保参与研究的每位患者都能提供尽可能多的信息。
美国国立癌症研究所的NCI-CONNECT项目的使命是通过将患者、医疗保健提供者、研究人员和倡导组织联系起来形成合作伙伴关系，来应对罕见中枢神经系统癌症研究和治疗中的挑战及未满足的需求。2018年11月19日，该项目召开了一次关于少突胶质细胞瘤的研讨会，少突胶质细胞瘤是其初始项目组合中包含的12种罕见中枢神经系统癌症之一。本次研讨会的目的是讨论少突胶质细胞瘤研究中的科学进展和监管挑战，并制定一项行动呼吁，以推进对这种癌症的研究和治疗。
研讨会的建议包括多方面且相互关联的方法，涵盖：生物学和临床前模型、数据共享以及先进的分子诊断和成像；临床试验设计；以及患者宣传和参与。
NCI-CONNECT项目有能力与其他利益相关者合作应对少突胶质细胞瘤护理和研究中的挑战，并正在为未来的倡议制定一系列行动项目。
