Resources

November 2018 Significant variation exists in both the types and definitions of outcome measures used in patient registries, even within the same clinical area. This variation reduces the utility of registries, making it difficult to compare, link, and aggregate data across the spectrum of clinical care and reporting. To address these limitations, the Agency for[…]

Feb 2018 Registries vary widely in geographic scope. Some registries collect data at a local or regional level, while others collect data at a national or multinational level. Multinational registries, also called multicountry, global, or international registries, offer unique research opportunities beyond those offered by national, regional, or local registries. By collecting data from multiple[…]

Feb 2018 A patient registry is “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposure and that serves one or more predetermined scientific, clinical or policy purposes.”1 Registry-based studies, by definition, are observational in[…]