The study offers an overview of the most recent advancements in primary immunodeficiency registries across the world, based on recent literature supplemented by some earlier references for completeness. New primary immunodeficiency registries are springing up all over the world, while old databases continue to thrive and give vital information to doctors and researchers.
Data on a significant number of patients can only be obtained through collaboration in the field of rare illness research. Primary immunodeficiency registries are formed on various geographic levels and have diverse technological forms. Some registers are run by individual departments or hospitals, whilst others, such as a national registration, collect data from the entire country. It is now possible to quickly expand documentation to the international level thanks to contemporary information technology and networks. Most patient registries include comparable but not identical sets of data, but some specialize in, say, genetics or only include data from patients who have had a certain type of treatment. This review demonstrates the use and power of worldwide immunodeficiency registries, as well as potential barriers and limits.