Registry Working Party
The ESID Registry Team
The ESID registry Working Party is responsible for the maintenance and further development of the ESID registry. With the previous generous support of the PPTA and other sponsors, a registry team had 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 5 national representatives are elected. This group convenes regularly to decide about technical and conceptual changes in the database and evaluates 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, The Netherlands, Spain, Italy and Germany share their data with the ESID registry, thus providing an important backbone for this common European effort.
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.
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