Patient Registries
Patient Registries are valuable tools to collect real world long term data.
The definition of a patient registry is "an organized system that uses observational study methods to collect uniform data (clinical or other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s)".
Registries for evaluating patient outcomes: a user’s guide, AHRQ No 07-EHC001-1, April 2007