Part 2 of Global Genes’ Data DIY builds a common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, learn how to develop a governance plan for your program that includes key elements such as, defining objectives, identifying stakeholders, building a team and providing informed consent. Shelley Bowen and Emily Milligan share the evolution of the BRR registry over the years. Shelley will share lessons learned about enrollment, diagnostics and natural history of disease, and Emily will describe the business of registries and clinical trial design. Watch the workshop live here! Emily and Shelley present at 3:30 pm EST. A recording of this workshop will be available on the registration page on July 25th, 2019.