7th meeting of the ESID registry working party
The European Society for Immunodeficiencies (ESID) Registry working party (WP) steering committee held their 7th meeting in Freiburg, Germany, on the 22nd April to discuss operational aspects of this online Registry.
The registry of PID patients by their physicians is possible through this platform since 2004. In 2014 a renewed platform was implemented but the migration of older registries is still taking place. Overall the Platform lodges a total of 20.000 Patient registries, while most of these registries are from Europe other countries like Turkey and Russia are also contributing.
The Steering Committee was able to secure funding for 2015 and are now working to find a funding pattern, ideally for the next 5 years. The Registry is very important to ESID, to physicians treating patients with a PID and for research purposes. With 500 new patients being entered each month by PID centres further diagnostic criteria will be developed by the immunologists involved. For future steps, the WP will develop a social media presence and is looking to include the ESID registry in the EU Rare Disease Registry. It is essential that NMOs lobby their PID network for inclusion in this Registry.
The aim of the ESID registry is to build a common data pool and estimate the disease burden of primary immunodeficiencies in Europe and to provide an internet-based database for clinical and research data on patients with PID. Since 2014 the ESID registry WP is chaired by Dr Nizar Mahlaoui (France, IPOPI MAP Vice-Chair).
The Registry has a 3 levels structure: Level 1 – documentation process, Level 2 – disease specific basic dataset, Level 3 – study protocol for specific diseases which requires specific funding (currently 8 are being considered).