Neuro-Ophthalmology Research Disease Investigator Consortium (NORDIC) Network

描述（由申请人提供）：神经眼科研究疾病研究者联盟（NORDIC）是一个由神经眼科医生和其他医生组成的组织，旨在进行前瞻性临床研究。神经眼科学是神经病学和眼科学的一个子专业，它涉及连接两个专业的科学和医学方面。有一个广泛的神经眼科疾病，共同影响数百万人。其中许多是与其他全身或神经系统疾病相关的视觉障碍，许多符合美国政府对“罕见”疾病的定义，尚未得到充分研究。该网络准备对其中两种疾病进行研究：特发性颅内高压和甲状腺眼病。在许多神经眼科疾病的诊断评估或治疗方面，从业者之间几乎没有共识。NORDIC将提供组织和运营能力，以进行多地点观察和治疗试验，涉及近200名社区和学术从业人员，以解决有关风险，诊断，治疗和其他管理方面的许多关键但尚未回答的问题，这些疾病的研究离不开临床研究组织。NORDIC的策略是提供一个强大的中心协调，以开放的研究者网络，以便平行进行多项试验，采用可纳入标准临床实践的方案。强有力的中央协调由以下机构提供：NORDIC主席和执行委员会，他们是公认的神经眼科和临床研究的领导者;每项研究都使用指导委员会;数据协调和生物统计中心，该中心是国家多中心研究的专家;以及适合神经眼科评估的阅读中心。开放的网络和结构将允许从业人员开发新的研究，获得认证，并根据其专业知识和兴趣参与特定的研究和协议。这种方法将允许招募和研究大量难以找到的研究患者，并对研究项目的科学质量进行高度控制。NORDIC战略的产品将是基于证据的诊断和治疗解决方案，可用于提高大部分人口的视觉健康。

DESCRIPTION (provided by applicant): The Neuro-Ophthalmology Research Disease Investigator Consortium (NORDIC) is an organization composed of neuro-ophthalmologists and other doctors, structured to perform prospective clinical research. Neuro-Ophthalmology is a subspecialty of Neurology and Ophthalmology that addresses scientific and medical aspects that bridge both specialties. There is a broad spectrum of Neuro-ophthalmologic disorders that collectively affect millions of people. Many of these are visual disorders associated with other systemic or neurological conditions and many fit the US Government definition as "rare" diseases and have not been adequately investigated. The Network is prepared to conduct studies on two of these disorders: idiopathic intracranial hypertension and thyroid eye disease. There is little consensus among practitioners on the diagnostic evaluation or therapy for many neuro-ophthalmological disorders. NORDIC will provide the organization and operational capability to perform multi-site observational and treatment trials, involving nearly 200 community and academic practitioners, in order to address the many crucial yet unanswered questions about risks, diagnosis, treatment and other management-aspects of these diseases that could not be studied without a clinical research organization. The NORDIC strategy is to provide a strong Central Coordination, to an open network of investigators at sites, in order to conduct multiple trials in parallel, employing protocols that can be incorporated into standard clinical practice. The strong central coordination is provided by: the NORDIC Chair and Executive Committee who are recognized leaders in neuroophthalmic and clinical research; the use of steering committees for each study; a Data Coordination and Biostatistics Center that is expert at national, multi-site studies; and reading centers appropriate for neuroophthalmic assessments. The open network and structure will allow practitioners to develop new studies, become certified and participate in specific studies and protocols, as appropriate to their expertise and interests. This approach will allow the recruitment and study of powerful numbers of otherwise-hard-to-find study patients, with a high degree of control over the scientific quality of the research projects. The products of the NORDIC strategy will be evidence-based diagnostic and treatment solutions that can be applied to enhance the visual health of a significant portion of the population.