Registry Working Party
ESID Registry - Newsletter January 2023
Prof. Markus G. Seidel
In this first newsletter after the 2022 ESID meeting I would like to thank all supporters and participants of the ESID registry (ESID-R) for their valuable contributions! Around 15 ongoing or recently completed research projects and the creation, curation, and expansion of the immense data pool for future studies would not be possible without you! Together with lawyers and the IT-team we are currently working hard on necessary updates of the legal and technical framework. Call for ESID-R steering committee members: If you want to actively shape the registry, contribute, lead a task force, please apply (six persons, see below)!
To solve bottlenecks in the pipeline of YOUR planned ESID-R projects, we will appoint a new administrative help and move the platform to a decentrally programmable platform (RedCap®) step-by-step (new projects first, followed by new patients). New projects can be applied for via the study proposal form ; and to clarify issues around roles, responsibilities and authorships, we updated publication guidelines and will hopefully publish a new Center Agreement to be able to include new Documenting Centres very soon.
Steering committee (SC): The main work of the SC has been the quick scope and feasibility check of new ESID-R study proposals. In the future, I am planning to appoint six persons to the SC who will in addition to that also lead task forces in the fields: backend (IT), frontend (user interface, reporting), Eastern Europe and neighbors affairs, human phenotype ontology (HPO) and genetics, clinical criteria and IEI classification (IUIS categories, OMIM etc.), studies and cooperations (projects, ERN-RITA, companies). Please apply with your motivation and a brief cv at until March 15th 2023.
As one of the first major benefits for participants I am planning to implement a new Center Dashboard (automated center report) served to you on a quarterly basis that provides epidemiological results from patients YOU care for in graphical detail, comparing them with those of your country and ESID as a whole (disease distribution, treatment modality, etc.). If you like to make additional suggestions according to your needs please email them to ; your ideas will be integrated as far as possible. The programming of this new feature is already scheduled and depends on the IT workforce, the center dashboard should hopefully launch later this year.
Further goals are as outlined in my motivation letter and include: an update of the genes and disease list according to IUIS categories, the publication of a 20-years ESID-R anniversary paper, enhancing cooperations with other working parties (e.g. Genetics), societies and registries (global IEI sister societies, EBMT, ERN-RITA, MERITA, IPOPI, SCNIR, etc.), an update of working definitions for genetically undefined IEI, secure funding, and so on, please make your suggestions and provide your feedback!
I am looking forward to a fruitful cooperation with all ESID members and partners and wish you all the best!