Dear Colleagues and Friends of the ESID Registry,
This is the good news letter: together with the “outgoing” Freiburg IT team, your contribution, the ESID registry steering committee and fantastic help from the new administrative office (many of you already had contact with Gergana Georgieva), we succeeded to complete the migration of the database to Castor-edc, a professional clinical trials operator. The first sub-studies like APDS and HLH should be online very soon as well. In addition to new centers, which we welcome, many countries, including the UK, Netherlands, Spain, Italy, as well as an entire continent (Africa) are considering to embark on this new era of the registry or have already done so. The possibility to participate in the ESID registry for free, to export your own data any time, and to create a national sub-network allows to keep full control over your or your country’s entered data while at the same time, being visible and, if approved, accessible for international collaborative research studies, is obviously a win-win.
With roughly one additional research study being proposed each month, we are reaching new levels of international collaboration (refer to the Studies page for the current studies’ calls for participation). I may announce, a bit humbly, that the automated center dashboard report is still “on its way”. Unfortunately, the launch was delayed a couple of times, but you (registered participants of the ESID registry with a user login) should receive at least a beta version into your inbox hopefully very soon. If you have not logged in to the new system yet, you should have received a repeated email invitation from no-reply@castoredc.com prior to this newsletter today, 30 April 2025 (if not, please check your spam folder)! This email contains a unique link to create your new account at castor to use the new registry. Please also use the possibility of the 2-factor authentication (you have to activate it in security settings), to prevent unauthorized access under your user name!
Our anniversary manuscript on current findings from >30,000 patients with IEI/PID from 30 years of the ESID registry by Kindle and Alligon et al. is currently being considered for publication (with minor revisions) at the Journal of Human Immunity, a new society-owned journal, where the latest IUIS classification of IEI/PID (genetically and phenotypically) was published this month. Please see the preprint here and follow its expected publication. This paper, with most of you as study group coauthors, will serve as benchmark reference for current outcomes, treatments, and survival estimations of patients with IEI/PID, and it highlights the achievements of the ESID registry over the last 30 years. Once again, I would like to thank the entire team (or rather, the teams) in Freiburg, and all of you for your support!
Regarding those centers who are also ERN-RITA healthcare providers: multiple attempts to simplify IEI/PID patient registration into the RITA registry directly through the ESID registry (by legally possible data forwarding, if patients consent), was only semi-successful so far. Of note, the RITA registry is only a one-time registration of patients for EU (EC) healthcare survey purposes with few common data elements and does not serve as collaborative research platform like the ESID registry. Currently, the ERN-RITA group suggests that patients’ data could be exported from the ESID registry locally by the user (onto the user’s computer, by bulk-export), filtered for the patients who consented to RITA and for the respective common data elements, and then uploaded (or bulk-imported) onto the RITA registry by the user him/herself. As soon as we know more about specific instructions, we will let you know.
Finally, we would like to draw your attention to upcoming conferences and to other activities of ESID working parties. Please see our new and continuously updated website at www.esid.org . One conference is of highest recommendation personally, not only because this focus meeting covers the interplay of hematology, oncology, and immunology with fantastic speakers and a really interesting program, but also because it takes place in beautiful Vienna, in November this year. Please find out more here about the ESID-EHA-SIOPE Symposium for latest info!
Lastly, for those who have not done so yet, we would recommend to file an amendment for the ESID registry study at your local IRB (verified users will get the amended protocol as of summer 2024 and PIC as email attachment with this newsletter). Please send us your updated PIC version (template in English attached) to make it available as choice option inside the ESID registry and to put it on our website as downloadable form for your use. Furthermore, to be on the same, current, contractual basis with all participating centers, an updated version of the ESID-Center Agreement (2024 general agreement and DTA, attached) should be signed from your institution and returned to us. As with any study amendment, from our perspective, the work with the ESID registry should not be interrupted in the meantime. If there are questions, please contact us.
I am grateful for and looking forward to continuing our fruitful cooperation!
Sincerely yours,
Markus Seidel
PS: I will be out of office in May and June, but Gergana Georgieva will be available at the registry administrative office, and Prof. Michael Albert, Munich, a steering committee member and former chair of the Inborn Errors Working Party, will replace me during my absence as chairperson.
Call for participation: XMEN/MAGT1 study invitation by Prof. Safa Baris
Previous Newsletters: if missed, please read here
Info reminder for the new registry visit structure: There are no “new visit” tabs like it used to be, and you cannot “open” entire previous visits. However, all the historical data were imported into the new system and are available for studies if needed. New entries (“Current status”) will overwrite the old entries on the user surface, but old data are saved in the background (and can be retrieved by clicking on “field history” in the cogwheel right next to the data field)
Tutorials @Castoredc.com:
- Login: https://academy.castoredc.com/courses/category/edc-cdms
- Data entry: https://academy.castoredc.com/courses/category/edc-cdms
Data export: https://academy.castoredc.com/courses/category/edc-cdms
Other: https://academy.castoredc.com/courses/category/edc-cdms
Attachments (for confidential ESID registry-related use only):
- Center Agreement version 4.4 without SCC [for EU countries; there is another version for countries outside the EU, please contact us by email if you need that]
- Study protocol version 3.0 (= an amendment based on previous version 2.0 or 2.1)
- Patient informed consent (English) version 4.0
- IRB approval for the ESID registry study, substantial amendment July 2024, Graz, Austria (German); plus an official translation in English.
Download the Newsletter in PDF here.
