Abstract

The proposed project “See System- Angelman syndrome (SeeSystem-AS)” is an interactive video database of clips and documentaries on Angelman syndrome (AS) as well as an acquisition and management application designed to provide researchers with tools and resources to evaluate patients and their progress during treatment and to analyze and track variations in symptoms and behaviors that can be subtle, but important, in understanding the impact of Angelman syndrome on daily living. Further, the testimony of caregivers and clinicians familiar with individuals with AS or expert researchers in AS, can be valuable in understanding Quality of Life standards appropriate to AS. SeeSystem-AS will be developed by GeneticaLens in collaboration with the Rare Diseases Clinical Research Network Angelman Syndrome Consortium (RDCRN-AS ) and will include a pre-existing database of videos on AS (The Angelman Project created from 1996-2002), new videos based on a follow-up of the subjects featured in the Angelman Project, and data collection and analysis tools specifically designed for use by the RDCRN-AS’s Natural History of Angelman Syndrome research project now in progress.

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