The early history of the ESID registry

The extremely interesting article by Gerhard Kindle et al. (1) reporting data from the registry of the European Society for Immunodeficiencies (ESID-R) briefly mentions in the first paragraph that the ESID-R was established as a hard copy–based database in 1994 (1), and this offers me the occasion to describe more extensively the origin of the registry, whose history has not been recorded yet in full.

The European Group for Immunodeficiencies (EGID), precursor of ESID, established the EGID registry in January 1994, as part of a concerted action operating with a grant from the European Union (E.U.) (see below). The EGID had been founded in 1983 at a meeting organized in Rome (Italy) by Prof. F. Aiuti (2), and it organized six biennial meetings until, at the sixth EGID biennial meeting held in Sitges (Spain) in October 1994, it was decided for EGID to officially become ESID. By 1983, reports of two national registries from Europe had already been published (3, 4), and the World Health Organization Scientific Group on Primary Immunodeficiencies had just published its first report (5).

At the fifth EGID meeting, held in Lugano (Switzerland) in 1992, a proposal for an E.U. concerted action on primary immunodeficiencies funded by the BIOMED-I was decided with Prof. A. Fischer as coordinator. The EGID president Prof. R. Seger informed all participants of the success of the application in a newsletter of the EGID in January 1994 (Figs. S1, S2, and S3). The first goal of the concerted action was the establishment of a European Registry of Primary Immunodeficiencies, and a Working Party composed of L. Hammarstrom (Huddinge, Sweden), G. Morgan (London, UK), and myself in Rome was appointed (Fig. S4). The data were provided on paper forms similar to those used by the existing national registries and transmitted by fax or mail to Huddinge, where they were stored in a dedicated computer.

The EGID Registry Working Party reported at the Sitges meeting that >500 patients had already been entered into the registry (Fig. 1, A and B). The primary center for the collection of data was in Huddinge, with additional centers in London and Rome. The following report of the now ESID-R, published in 1998 (6), included 7,616 cases from 25 countries, and a final one based on this registry reported 9,707 patients from 26 countries (7). Soon the registry was to change into an internet-based database (8), launched in June 2004, and stored on servers of the University of Freiburg, Germany. This led to the first report in 2007 of the new ESID-R (9) on 2,386 patients from 20 countries. The change from EGID-R to ESID-R was only in the name, so it is correct to date its establishment in 1994.

For anyone interested in the history of EGID, in Fig. S5, I reproduce the poster presented at the 21st biennial meeting of the ESID held in Marseille (France) in 2024.

The path to the success of the ESID-R started even before ESID was created, and many difficulties due to the lack of present technologies were overcome with the dedicated time and efforts of researchers and physicians studying primary immunodeficiencies from all over Europe.