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:

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.

Therefore, we deeply appreciate your valuable contributions and invite you to participate in the study “Spectrum of P ulmonary Manifestations in Patients with inborn Errors of immunity (IEI) – an ESID Registry Study”.

Deadline extended until August 27th, 2024.

CLOSED: 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


"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

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. 

Call for participation: MOESIN Deficiency

To assess the highly variable clinical consequences and treatments of Moesin deficiency, collect real world evidence about this ultra rare disease, and ultimately to improve patient management, Isabelle André, Jean-Sébastien Diana and coworkers in Paris are performing an international registry study (XMAID international registry NCT06278337). If you care for a MOESIN-deficient patient and want to participate, please contact   to participate in the study. Inclusion of new patients is possible till the end of 2024.

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

Retrospective study on clinical manifestation, treatment, and outcome in FHL2 and FHL3

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

HLH Study (Registry in cooperation with the Histiocyte Society)

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. 

APDS Study (APDS Registry)

The first ESID Registry level 3 project.

Currently recruiting!

Publications from this study have been released in 2018 and 2023!

Please refer to the ESID Registry Publication list for further details.

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, )

GAIN website:

Publications from this study have been released in 2023!

Please refer to the ESID Registry Publication list for further details