European Society for Immunodeficiencies

The establishment of the ESID registry has been a formidable achievement and the yearly growth of the database is a success for the initiators of this registry, the many people who have entered patient data, the sponsors from PPTA and other funding organisations, the patients and the treating physicians. The awareness of the registry and the willingness to contribute data to this valuable resource has continuously increased. Several national registries, e.g. in the UK, France, Spain, Italy and Germany share their data with the ESID registry thus providing an important backbone for this common European effort. More than 13.000 patients have been entered into the database until March 2011.

However, although some important publications have made use of the information provided by the ESID registry, its potential as a scientific tool has not yet been fully explored. Registries allow to address questions about epidemiology, the natural history of PID, factors influencing prognosis and quality of life or the development of care patterns. Not only scientists and physicians can ask such questions, but patient organisations and other stakeholders of the registry are equally invited to put foward their questions.

It is of key relevance to the registry that these questions are asked first and a plan of analysis is elaborated considering clinical, immunological, epidemiological and biostatistical issues. Ideally, this must occur BEFORE the data elements are developed that make up the registry. Asking new questions to an existing database always has to fight with significant limitations in data precision and reliability.

As a perspective for the registry, I envision a „core facility“ consisting of a board of clinicians, a biostatistician and an epidemiologist, that will help to translate relevant clinical questions into data entries and studies. This form of quality control should help to develop the full potential of the registry. Reducing overall data entries by eliminating imprecise data fields and directly connecting the entries to specific studies should increase motivation for full registration without compromising the excellent service of the registry as an overall PID documentation platform.

Stephan Ehl, CCI Freiburg, Head of the ESID Registry Working Party, April 2011