Patient Registries: The Good, the Bad and the Opportunities [HRA Members Meeting, Fall 2019]

Breakout Session:

A Natural History of HRA & Patient Registries

Informed by member and non-member experiences, challenges, questions, and accomplishments, this session will present and discuss organizations’ patient registries efforts. Challenges abound in available technology platforms, recruitment, data types, standardization, access and sharing, and of course, cost. Yet survey respondents across the board indicate the value and benefits registries bring to the patient community. As a launching point for a potential HRA Patient Registry Working Group, feedback gathered during this session will help guide the effort’s goals, content curation, and future discussionsJoin us for a discussion of current practices and how we can learn from each other to best position your organization to have an impactful and sustainable patient registry.