Learn – RARE University

Data DIY: Data Trusts, Governance, and Collection Platforms

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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.

Thank you to our content developers!

On behalf of Global Genes and everyone who has helped to create this course, we welcome you and wish you a great learning experience.

We hope to inspire and empower you to realize your potential for driving progress in rare disease!

Cost: Free
Instruction Type: Self-Paced
Certificate: Yes