Data DIY: Data Trusts, Governance, and Collection Platforms

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.

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

Thank you to our content developers!

Shelley Bowen Co-founder Barth Syndrome Foundation
Megan Doerr Principal Scientist, Sage Bionetworks
Sonya Dumanis, PhD Senior Director of Innovation Epilepsy Foundation
Liz Horn Principal LHC Biosolutions
Eric Camino, PhD Director, Research & Clinical Innovation Parent Project Muscular Dystrophy
Emily Milligan Executive Director Barth Syndrome Foundation
Ryan Fischer Senior Vice President, Community Engagement Parent Project Muscular Dystrophy
Steve Roberds, PhD Chief Scientific Officer Tuberous Sclerosis Alliance
Matthew J. Toth, PhD Science Director Barth Syndrome Foundation