Registry Working Party


Information on studies using the ESID Database and the data access and publication guidelines.

Data access and Publication rules, Research Proposal Form

Information on studies using the ESID Database and the data access and publication guidelines.
Last updated on July 2, 2019.

APDS Registry

The first ESID Registry level 3 project.

Currently recruiting!

The first journal publication resulting from this study has been published in 2018!

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

Unclassified Antibody Deficiency (unPAD) Study

Unclassified Antibody Deficiency in the European Society for Immunodeficiencies (ESID) Registry.

Please note:

The possibility to document the extended Level 2 dataset is offered automatically by the system for all patients with a respective PID-Diagnosis (see table).

Participation in the Study is possible by documenting the respective Level 2 Forms.

If you are unceartain at the moment about the participation you might want to choose the option 'ask me later' .

Already > 2,000 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).

HLH Study (Registry 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. 

GAIN Study (GAIN registry)

GAIN Study

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:

CGD Study

Long term prognosis of patients with chronic granulomatous disease treated with conventional treatment or stem cell transplantation: a comparative retrospective study.

Ataxia-telangiectasia (A-T) Study

Retrospective analysis of ESID-Registry data.