Registry Working Party
Information on ongoing studies using the ESID Registry Database.
For completed studies please refer to the list of Registry publications.
If you want to propose a study to the ESID Registry, please use the following Research Proposal Form:
Please be aware that there will be a calculation of costs to be reimbursed by the study center to ESID for non-routine additional technical and administrative work according to a template that will be subject to adaptation and changes without prior notice.
ESID registry Working Party is inviting the ESID registry participants to take part in the "Malignancies in IEI" study L1 documentation latest by August 31st 2022.
Level 2 survey (via REDCap forms) now open until end of March, 2024. Detailed information on how to participate has been provided via email to all documenting centres.
The IDDA score has already been available as optional module (tab) in the level 1 for your own use at the initial and follow up patient entries and is designed for all IEI with immune dysregulation. Now, I am inviting your active contribution to a prospective study until end of 2023 (prolongation possible), aiming to implement a powerful tool for assessment and monitoring of disease activity and phenotype patterns!
M. Seidel, March 2022
Familial hemophagocytic lymphohistiocytoses (FHL) are a group of genetic disorders of cytotoxicity, which predispose to the life-threatening syndrome of HLH. FHL2 (Perforin deficiency) and FHL3 (MUNC13-4 deficiency) are the most frequent forms of the disease. Current therapies include control of the aberrant immune activation by immune-/chemotherapy followed by HSCT still show about 20 to 40% overall mortality. A collaborative project between ESID, Histiocyte Society and inborn errors working party of EBMT MORE HERE
How can I report a patient for the FHL2/3 study? Click Here
The primary goal of the HLH Registry Study in Cooperation with the Hstiocyte Sciety is to collect data relevant for assessment of feasibility and design of future interventional studies on the treatment of HLH. This requires a detailed analysis of the target patient population treated by centers potentially participating in such studies. Another important goal of implementing a HLH Registry is to improve the network of physicians collaborating on HLH and to prepare the infrastructure for a future trial. Implementing routines for patient identification (and central notification), diagnostic algorithms and the use of a GCP database that is fully adapted to running interventional clinical trials are important milestones in facilitating the execution of a clinical trial.
Extention to Level 1 for patients with ILD.
Currently under Revision (12/2023) by Study team.
GAIN is a network of physicians and scientists interested on collecting data on patients with multiorgan autoimmunity with and without immunodeficiency. The network started in Germany, this is why the dataset is called German multi-organ Auto Immunity Network (GAIN, https://www.research4rare.de/forschungsverbuende/gain/ )
GAIN website: www.g-a-i-n.de
Publications from this study have been released in 2023!
Please refer to the ESID Registry Publication list for further details
An ESID Registry level 3 project.
If you treat a SOCS1 patient at your center and want to include her/him into the registry please send an email to .
We then will provide individual information to you regarding the next steps.
Already > 3,200 level 1 + level 2 forms completed for the unPAD study
We thank everyone for this incredible result so far.
All of you who have not yet started your participation, please reconsider and join this very large cohort of hypogammaglobulinemia patients (unclassified PAD + CVID as controls).