Inherited Retinal Degenerative Clinical Trial Network. Addendum
Final addendum 30 Sep 2012-29 Sep 2013
FOUNDATION FIGHTING BLINDNESS CLIINICAL RESEARCH INST COLUMB IA MD
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The Foundation Fighting Blindness Clinical Research Institute FFB CRI Formerly National Neurovision Research Institute NNRI, the clinical arm of the FFB, established the National Eye Evaluation Research NEER Network, composed of a collaborative group of five clinical treatment and evaluation centers. The intent of this network was to advance the science of therapeutic and preventative interventions for inherited orphan retinal degenerative diseases and dry age-related macular degeneration AMD through the conduct of clinical trials and other clinically relevant research. The scope of research carried out encompassed i a phase II clinical trial to evaluate the safety and efficiency of new therapeutic and preventive approaches, by repurposing an FDA-approved small molecule drug ii natural history studies to develop standardized criteria to define disease stage, severity and progression iii observational studies to enhance understanding of the natural history of these diseases for different genotypes and phenotypes and iv evaluation of the reliability and validity of different available treatment outcomes measures to determine those that are most appropriate for various genotypes and phenotypes as well as for specific interventions. The NEER Network also developed standard protocols for data collection maintained and expanded patient databases, classified by genotype and phenotype, which allowed for the timely identification of eligible patients and facilitate patient access for clinical participation and maintained readiness for collaboration with the Department of Defense, training program for military ophthalmologists in the latest technologies and diagnostic and treatment regimes.
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