What is a Registry?

Title: 
What is a Registry?

 

    A patient registry is a collection, for one or more purposes, of standardized information about a group of patients who share a condition or experience.

    According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”