extendinggenomicdatasharingpolicies-ncornationalcenter.ppt

Precision medicine: Prevention and treatment strategies that take individual variability into account. Several of the talks have been directly or indirectly related to Precision Medicine. Using a mindmap to show some major NCI efforts towards Precision Medicine and how important semantics is and will be in the future to success. Open Science – BD2K activities apply here, as Phil Bourne discussed -- and to other areas of this mindmap as well. A research commons, that ties together data description and access, software description and access, description with standards… Interoperability through Metadata – NCI has worked in that space for many years with caDSR. Off the graph, examples of other important efforts – NIH CDE portal, PROMIS, NeuroQOL, NLM’s VSAC Value Set Authority Center . Semantic Interoperability through Integration of ontologies – that is an active area, and also a challenge area – with needs to reuse existing, integrate existing, and integrate research and clinical data streams. Data Sharing critical – Towards that end, will describe the New Genomic Data Sharing Policy Resources of course! Data sharing is hard and takes a lot of resources –people/time/money for IRBs, clearances, consenting, publishing,… Tools – A challenge area. Of recent note, Pistoia Alliance Mapping effort to make it easier to map ontologies. Calls for Precision Medicine: See: A New Initiative on Precision Medicine Francis S. Collins, M.D., Ph.D., and Harold Varmus, M.D. N Engl J Med 2015; 372:793-795February 26, 2015DOI: 10.1056/NEJMp1500523 * National Cancer Institute * TCGA The Cancer Genome Anatomy Project – the project that needed to be done to move precision medicine forward -- comprehensively characterize the genomic and molecular features of ovarian and GBM, expanded to over 20 types. Systematic protocols to generate the data, etc. TARGET Therapeutically Applicable Research To Generate Effective Treatments Consortium effort with comprehensive approach to s