The ESID registry Working Party is responsible for the maintenance and further development of the ESID registry. With the generous support of the PPTA, a registry team has been formed that deals with all technical issues, continuously updates the disease entities, helps centers with issues of ethical consent, provides data analysis for study initiatives using registry data and answers queries on patient cohorts for further studies.
The registry team is guided by a registry steering committee, led by the chair of the registry working party, into which 10 representatives are elected for a two-year term. This group meets twice per year to decide about technical and conceptual changes in the database and to evaluate study proposals using registry data.
The aim of the ESID registry is to build a common data pool and estimate the disease burden of primary immunodeficiencies (PID) in Europe and to provide an internet-based database for clinical and research data on patients with PID. This database is a platform for epidemiological analyses and can also serve as a tool relevant for the development of new diagnostic and therapeutic strategies or the identification of novel disease-associated genes. Several important 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.
The most important current activity is a conceptual improvement of the registry that will entail a new data model based on a priori phrased epidemiological questions, a better control system for data quality and completeness and a new web application for online data entry. A prototype of this new web entry system will be available later this year. A testing phase will be used to get feedback from the users, followed by quality-controlled data transfer from the old system and production start of the new system. Importantly, the current (old) system will remain available to registered users for reference in the future.
More information on the Registry project in general, the steering committee, the redesign process as well as publications and patient consent forms are available in the Registry subsections.
Chairman ESID Registry Working Party