Neuro-Ophthalmology Research Disease Investigator Consortium (NORDIC) Network

点击翻译按钮获取中文摘要

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.