Registry and Biorepository Learning Community Call [August 24, 2023]

In the August meeting of the Registry and Biorepository learning community, we heard from an expert on considerations for international research for patient registries, including approaches to handle regional differences in data privacy regulations. Josh Lounsberry has designed, built, and operated patient registries as both an academic researcher and the founder of a CRO providing services to patient organizations, clinical researchers, and pharmaceutical companies. He brings a wealth of international experience in community engagement, ethics and regulatory considerations, and creating impacts with data.

During the session, attendees shared resources that they have found helpful for complying with data privacy regulations, including the Data Protection Impact Assessment template (