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Symposium on Personal Control of Genomic Data for Research

Sep 26, 20191 min read

Our President Amanda Haddock, moderated a session at the NCI Symposium on Personal Control is Genomic Data and Research. Day 2 is today and we will get to hear from fellow Kansan Jace Ward about his experiences as a patient trying to get information. We are thankful to the NCI leadership for giving the patient community such a strong presence at this symposium. If you are interested, today will be broadcast and there’s a lot being tweeted using #NCIParticipantShareData19 Check out the Facebook post here.

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Dragon Master Initiative works closely with the National Cancer Institute (NCI) and more than 32 hospitals as part of the Children’s Brain Tumor Network (CBTN). We have helped develop a large-scale database that houses genomic, clinical and environmental data on pediatric brain tumors, and that can be used as a model for research into other types of cancer and rare disease. We support open data projects that share data with the world — not just a select group of hospitals — and that share that data as quickly as possible so we can impact patients of today.

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