Research Studies

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:

ESID _Research proposal form Jan26.2023

ESID Registry Study Project Fees | Reimbursement Scheme as of August 2023

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.

GAIN Study (GAIN registry)

Currently recruiting!

Project description

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

SOCS1 Study (SOCS1 registry)

An ESID Registry level 3 project.

Currently recruiting! If you treat a SOCS1 patient at your center and want to include her/him into the registry please send an email to cci.socs1@list.uniklinik-freiburg.de.

We then will provide individual information to you regarding the next steps.

unPAD Study (Unclassified Antibody Deficiency Study)

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).

Study on Hyper-immunoglobulin E syndrome (HIES) due to dominant-negative STAT3 mutations

Centres that have fully registered eligible patients in the ESID-registry, have already been contacted directly and asked for approval to use the documented data. Data has been extracted from ESID-R and provided to the study team. Analysis pending (01/2024).

Registry Landscapes for Inborn Errors of Immunity (IEI).

On behalf of the ESID registry working party steering committee, we would like to understand how many active registries for inborn errors of immunity (IEI) for patient data entry exist.

Pulmonary diseases.

Pulmonary diseases significantly impact patients with Inborn Errors of immunity (IEI), yet detailed knowledge and current treatment regimens remain limited.

Call for participation: Malignancies in IEI – an ESID registry study

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

Call for participation IDDA2.1 score - an ESID registry prospective study

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

GLILD, (Extension of the data fields for ILD in PID in the ESID registry)

Extention to Level 1 for patients with ILD. Currently under Revision (12/2023) by Study team.

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Chairperson WP Registry (2022-2026)

Prof. Markus G. Seidel

Phone: +43 316 385 80215

E-mail: registry@esid.org