title: The use of databases in primary immunodeficiencies.
abstract: OBJECTIVE
  We provide an overview on the latest developments in primary immunodeficiency registries worldwide, on the basis of the recent literature amended by some older references to achieve completeness.
  
  
  RESULTS
  New primary immunodeficiency registries are emerging worldwide, although existing databases continue to thrive and provide valuable insights for clinicians and researchers.
  
  
  CONCLUSIONS
  In the area of rare disease research, data on a meaningful number of patients can only be achieved via collaboration. Registries for primary immunodeficiency are organized on different geographic levels and appear in various technical forms. Some registries are operated within single departments or hospitals, whereas others collect data from a country in the form of a national registry. With modern information technology and networks, it has become feasible to easily extend documentation to the transnational level. Most patient registries cover similar but not identical sets of data, whereas some have a special focus on, for example, genetics or incorporate only data from patients who have undergone a specific form of treatment. This review shows the usefulness and power of international immunodeficiency registries, as well as possible hurdles and limitations.
authors.affiliation: Center for Chronic Immunodeficiency, University Medical Center Freiburg and University of Freiburg, Germany for the ESID Registry Working Party.
authors.forename: Gerhard
authors.initials: G
authors.lastname: Kindle
authors.forename: Benjamin
authors.initials: B
authors.lastname: Gathmann
authors.forename: Bodo
authors.initials: B
authors.lastname: Grimbacher
mesh_terms: D017074:Common Variable Immunodeficiency; D016208:Databases, Factual; D006801:Humans; D012042:Registries