ESID registry Working Party invited all ESID registry participants to take part in the “Malignancies in IEI” study L1 documentation.
Level 2 survey (via REDCap forms) is now
CLOSED
“Malignancies in IEI” data collection was originally scheduled to last until January 15th 2024 (EXTENDED till March 30th 2024, 2nd and final extention till APRIL 28th, 2024)
Dear ESID registry participants, Dear colleagues and friends,
We sincerely thank you for your time and effort in participating in the survey.
Kind regards,
Joris van Montfrans, Markus Seidel, Gerhard Kindle, Delfien Bogaert
Dear ESID registry participants, Dear colleagues and friends,
Malignancies may pose a serious challenge in IEI patients. We wish to assess the incidence of malignancies in IEI and learn about management challenges, using the ESID registry. So far, we already know from your entries that at least 4.7% of ESID-registered patients suffer from malignancy as first manifestation or during follow-up of IEI. However, this number is derived from only about a quarter of all registered patients.
We now ask for your help to increase the resolution and the size of this dataset. The incidence of malignancies in patients with IEI is increased and their outcome is worse than in patients without IEI. There is a clinical need to better understand which IEI carry the highest risks for malignancies, which patients with a malignancy need to be screened for IEI, and how the presence of an IEI affects treatment and prognosis of the malignancy.
With this call, we would like to ask all ESID registry participants to register if a patient has ever suffered from a malignancy (Y / N) . You can complete the level 1 fields regarding the occurrence of a malignancy. for all registered patients thus far. Please also enter the type of malignancy OR tick “no” if –to your knowledge– the patient has not yet suffered from cancer at time point of entry/follow-up.
We asked to complete this by August 31st 2022. After completion of the level 1 data acquisition, we sent out a brief level 2 survey to collect additional details on those IEI patients who developed a malignancy, including treatment and outcome.
Level 2 survey (via REDCap forms) now closed (as of APRIL, 29th, 2024)
Dear participants of the ESID registry,
the current study on malignancies in patients with IEI is entering its last phase before data closure and analysis. In order to reach everyone and not miss any patient, we will keep the data entry (recruitment) open for two more months until end of March 2024. Please be aware that for participation in that study, you need to fill out the additional survey provided through the link in the (yellow ) headline that pops up in patients with malignancies (5-10min if familiar with the patient). You have to follow that link to the RedCap-survey and submit it when finished. If you click on the link out of the ESID registry, the form is prefilled with the patient ID#. This new window may be saved, shared with a colleague (e.g. the oncologist), or filled later, but ultimately it needs to be submitted to be included in the study.
Many thanks from the study team!
Delfien Bogaert, Joris van Montfrans, Gerhard Kindle, and Markus Seidel
