A registry platform refers to a special computer program designed to capture and manage patient data. Patient registry platforms are available from a number of resources or may be developed by a patient advocacy group or other stakeholder in the therapy development process.
Defining Patient Registries and Research Networks from “Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks” [Internet, 2013]
Rare Diseases Registry Program (RaDaR): Pick a Data Collection Tool
Patient Registries from “Registries for Evaluating Patient Outcomes: A User’s Guide” [Internet, 4th Edition]