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 works in close collaboration with the registry steering group (SG), led by the chair of the registry working party. The head of the Registry Team is a member of the SG. 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.
As announced in the beginning of the new term, a new steering committee (steering group) consisting of six persons besides the chair was formed in April 2023, based upon applications that were submitted until the deadline in March. Members of the steering committee together with the chairperson review research project proposals that involve ESID registry data critically to evaluate scope, feasibility, priority, quality, and to avoid redundancies. Furthermore, they lead specific task forces on important topics to maintain and improve the registry.
New SC members (without academic titles) and their main topics are:
- Gerhard Kindle, Freiburg - Backend, Technical and Strategy
- Antonios Gkantaras, Thessaloniki - Frontend and Reporting
- Svetlana Sharapova, Minsk - Eastern Europe and Neighbors Affairs
- Catharina Schuetz, Dresden - HPO, Phenotype-Genotype
- Sujal Ghosh, Duesseldorf - Genes and Disease Classification
- Michael Albert, Munich - ERN-RITA, EBMT and other registry cooperations
Extended Steering Committee / Registry Advisory Board Members:
- Martine Pergent, Chambéry, IPOPI president
-Nizar Mahlaoui, Paris, Ceredih-ESID relations representative and previous WP chair
-Claudio Pignata, Naples, IPINET-ESID relations representative
-Matthew Buckland, London, UKPIN-ESID relations representative
-Mikko Seppänen, Helsinki, previous WP chair
-Stephan Ehl, Freiburg, previous WP chair
I am grateful for this fantastic personal support and, on behalf of the whole steering committee, would like to encourage anyone to communicate additional ideas and suggestions to improve our valuable platform further.
Markus Seidel, May 2023
More information on the Registry project in general, the steering group as well as a list of publications are available in the respective Registry subsections of the website.
THANK YOU TO OUR SPONSORS!