Whether you are creating a contact registry, a clinical patient registry, a natural history study, or a biobank, one of your first steps will be to create a process that allows you to collect, store, and share data in a way that protects the rights and privacy of each participant. The purpose of this module is to equip you with the knowledge, resources, and tools you’ll need to become a good data steward.

By the end of this module you will able to; explain your responsibilities as a data steward, list the elements of good governance, describe the processes used to protect patients’ rights, including ethical recruitment, informed consent, and Institutional Review Boards (IRBs), draft an initial governance plan for your organization that describes how data will be accessed, who will make decisions on data sharing, and processes that will be used to protect patient rights, and evaluate and compare platform options.