Neuro-Ophthalmology Research Disease Investigator Consortium (NORDIC) Network

神经眼科研究疾病研究者联盟 (NORDIC) 网络

• 批准号: 7930988
• 负责人: Mark J Kupersmith
• 金额: $ 14.11万
• 依托单位: ST. LUKE'S-ROOSEVELT INST FOR HLTH SCIS
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-02-06 至 2014-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7930988
• 关键词: Academy; Address; Affect; Biometry; Clinical Research; Clinical Trials; Commit; Communities; Community Practice; Consensus; Data; Data Collection; Diagnosis; Diagnostic; Disease; Enrollment; Ensure; Evaluation; Fostering; Funding; General Practices; Government; Health; Industry; Institutes; Link; Manuals; Measurement; Medical; Methods; Monitor; Neurologic; Neurologist; Neurology; Online Systems; Operative Surgical Procedures; Ophthalmologist; Ophthalmology; Optometrist; Outcome Measure; Patients; Performance; Pilot Projects; Population; Principal Investigator; Procedures; Protocols documentation; Pseudotumor Cerebri; Quality of life; Rare Diseases; Reading; Recruitment Activity; Regulation; Research; Research Ethics Committees; Research Personnel; Research Project Grants; Risk; Safety; Site; Societies; Solutions; Specialist; Structure; Surveys; Training; U-Series Cooperative Agreements; United States National Institutes of Health; Update; Vision Disorders; Visual; base; clinical practice; design; evidence base; human subject; improved; interest; medical specialties; meetings; oculomotor; organizational structure; programs; prospective; thyroid associated ophthalmopathies; transmission process; treatment trial; web site

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.

描述（由申请人提供）：神经眼科疾病研究联盟 (NORDIC) 是一个由神经眼科医师和其他医生组成的组织，旨在开展前瞻性临床研究。神经眼科是神经病学和眼科的一个子专业，致力于连接两个专业的科学和医学方面。神经眼科疾病种类繁多，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，但尚未得到充分研究。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。对于许多神经眼科疾病的诊断评估或治疗，从业者之间几乎没有达成共识。 NORDIC 将提供组织和运营能力来进行多地点观察和治疗试验，涉及近 200 名社区和学术从业者，以解决有关这些疾病的风险、诊断、治疗和其他管理方面的许多关键但尚未解答的问题，如果没有临床研究组织就无法研究这些问题。 NORDIC 的战略是为现场研究人员的开放网络提供强大的中央协调，以便采用可纳入标准临床实践的方案并行进行多项试验。强有力的中央协调由以下人员提供： NORDIC 主席和执行委员会，他们是神经眼科和临床研究领域公认的领导者；每项研究都使用指导委员会；数据协调和生物统计中心，是国家多地点研究的专家；和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者根据他们的专业知识和兴趣开展新的研究、获得认证并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，可用于增强很大一部分人口的视觉健康。