A patient registry is a collection of information about a group of patients who share a condition or experience. Patient registries allow doctors, researchers, and other professionals to learn from the real world experience of patients. Having uniform patient data allows researchers to combine input from hundreds or thousands of people. This helps researchers begin to see symptoms, outcomes, and patterns that might not otherwise be obvious.
Patient registries can be created by researchers or by patients themselves through patient support or advocacy organizations – these are called patient-powered registries. In patient-powered registries, patients and family members “power” the registry by managing or controlling the collection of the data and information, the research agenda for the data, and/or the translation and dissemination of the research from the data.