BioCentury
ARTICLE | Politics & Policy

Patient registries providing real-world data

February 13, 2016 2:58 AM UTC

Policy and advocacy organization FasterCures has published a report that surveys how patient groups are using registries, outlines best practices for their use, and points to their expanded roles.

Registries "inform natural history studies, assist clinical trial recruitment, facilitate safety monitoring, [and] allow patient participation in research," according to the report. It emphasizes the importance of treating patients who provide data to registries as partners who want to know how their data will be used and who want to receive outcomes data, and notes that some registries provide patients with information about how a participant's data compares to other participants'. ...