Dear Colleagues and Friends of the ESID Registry,
This is the short and hot summer newsletter:
1) Our 30 years registry report with results of >30,000 IEI/PID patients, based on YOUR contributions, has been published at JHI: see https://doi.org/10.70962/jhi.20250007 . As you will see (and has been visible also in the preprint medRxiv version since February), we strived to include all active contributors as coauthors in the collaborators list, which will be PubMed searchable once the new Journal achieves its PubMed legitimacy (expected later this year). THANKS again to all of you!
2) The long awaited automated center dashboard report is finished and will be made available within the coming days/weeks, and then quarterly. I think it is a fantastic “reward” for your work, visualizing your center’s IEI/PID epidemiology, top diagnoses, drug uses, and more – practical for your own use in teaching or for a local overview and presentations. The version of my center (Graz Pediatrics) is attached for your first glimpse, and it compares the user’s center with the country and entire ESID. The hierarchical pie charts are semi-interactive, showing genes, diagnoses, and patient numbers on mouse-over. Please note that it will be delivered as html file into your castor “Export” inbox, and you will receive an email from no-reply@castoredc.com every time a new report is available (make sure this sender does not go into your spam folder). The report also contains the long awaited list of patients who urgently need a follow-up. Please note that for now (at least in my hands), it only works on a pc/mac and not on a mobile phone, probably depending on browser settings.
3) Together with colleagues from the UK, we managed to include additional ca. 5,000 UK patients now, representing one of the largest national registries within the ESID registry, with direct online access to the ESID registry and substudies. WELCOME! In this context, we would like to apologize for a brief interruption of services due to a data migration issue which made it necessary to step back one day. A few centers lost one day’s work in that period. We deeply regret that and hope it will not happen again in the future.
4) You may have noticed that the design of the user interface @castor was updated and modernized. This does not change the functionality, on the contrary, it is supposed to accelerate the system!
With these good news and a reminder to look at the ESID-EHA-SIOPe focus meeting on the interplay of hematology, oncology, and immunology in Vienna, this November (https://interplay.kenes.com) I would like to wish you a great summer and hope to see you soon.
More and more new registry substudies are coming up. While that’s great news for the meaning and aims of our work, we try to restrict them to specific diagnoses and/or study groups in order not to increase your work load and maintain clarity and efficiency. Your input and suggestions are always welcome!
Please also visit the www.esid.org main page for news, courses, grand rounds, and other important society activities!
I am happy about our fruitful cooperation!
Sincerely yours
Markus Seidel.
You can see the Newsletter in PDF here.
