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: 7314781
• 负责人: Mark J Kupersmith
• 金额: $ 232.02万
• 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/7314781
• 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亚专科，解决科学和医学方面的桥梁这两个专业。有广泛的神经眼科疾病，共同影响数以百万计的人。其中许多是与其他系统或神经系统疾病相关的视觉障碍，许多符合美国政府定义为“罕见”疾病，尚未得到充分调查。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。从业人员对许多神经眼科疾病的诊断、评估或治疗几乎没有共识。NORDIC将提供组织和业务能力，开展涉及近200名社区和学术从业者的多地点观察和治疗试验，以解决关于这些疾病的风险、诊断、治疗和其他管理方面的许多关键但尚未得到解答的问题，这些问题如果没有临床研究组织就无法进行研究。北欧战略是为现场研究者的开放网络提供强有力的中央协调，以便并行进行多项试验，采用可纳入标准临床实践的方案。强有力的中央协调由北欧主席和执行委员会提供，他们是神经眼科和临床研究领域公认的领导者；对每项研究使用指导委员会；数据协调和生物统计中心，是国家多地点研究的专家；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，获得认证并参与适合其专业知识和兴趣的具体研究和协议。这种方法将允许招募和研究大量否则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。北欧战略的产品将是基于证据的诊断和治疗解决办法，可用于改善很大一部分人口的视觉健康。