Patient registry is a term that is not well defined. In its simplest definition, a patient registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Individuals provide information about themselves to these registries on a voluntary basis. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or private company.
Other terms also used to refer to patient registries include clinical registries, clinical data registries, disease registries, and outcomes registries. The terms may be used to try to distinguish the different type of data being collected, who is entering the information, or the registry’s purpose, but again these terms are not well defined.
A contact registry is the simplest form of a patient registry. A patient registry may support a natural history study and at that point may include medical records and information provided by clinicians involved in the person’s care.
NIH Clinical Research Trials and You: List of Registries
Patient Registries from “Registries for Evaluating Patient Outcomes: A User’s Guide” [Internet, 4th Edition]
NCATS Toolkit for Patient-Focused Therapy Development: Determine Patients’ Needs
Rare Diseases Registry Program (RaDaR): Learn About Registries