Talbird SE, Savatt JM. Patient data sharing of genetic and health information informs genetics discovery and fuels research. Presented at the 2019 Rare Disease Innovation and Partnering Summit; June 14, 2019. Boston, MA.

Hear how advocacy groups, including cureCADASIL and members of the GenomeConnect team from Geisinger, a National Institutes of Health (NIH) Clinical Genome Resource (ClinGen) grantee are working to enable patients to broadly share de-identified genetic and health data.

• Describe genomic data sharing efforts and discuss how patients are a critical stakeholders in data sharing to inform understanding of genetics

• Learn how data sharing can have a meaningful impact on research, particularly in rare diseases where a few patients may make up a large proportion of the disease population

• Discuss the role of data sharing in helping patients remain updated regarding their genetic test results

• Explore nuances of data sharing including technical and ethical considerations and how individual patients or advocacy groups can engage in data sharing

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