A patient registry is defined as an organized program for the collection, storage, retrieval, and dissemination of a clearly defined set of data collected on identifiable individuals for a specific and specified purpose, as well as the collected data.
Patient registries are essential tools for public health surveillance and research inquiry and are a particularly important resource for understanding rare diseases. Registries provide consistent data for defined populations and can support the study of the distribution and determinants of various diseases. One advantage of registries is the ability to observe caseload and population characteristics over time, which might facilitate the evaluation of disease incidence, disease etiology, planning, operation and evaluation of services, evaluation of treatment patterns, and diagnostic classification.
Any registry program must collect high quality data to be useful for its stated purpose. Registries can be developed for many different needs and caution should be taken in interpreting registry data, which has inherent biases.
You can find in this section information about the rare diseases epidemiological registries, that are currently managed by us, as well as detailed descriptions and data analysis of them.