Registry Working Party

Studies

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

SOCS1 Study (SOCS1 registry)

An ESID Registry level 3 project.

Released for recruitment!

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.

GAIN Study (GAIN registry)

GAIN Study

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

Immune Deficiency and Dysregulation Activity (IDDA) score

The immune deficiency and dysregulation activity (IDDA) score is a tool to measure disease activity and burden in patients with immune dysregulation as assessed by the caring physician.

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.

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).

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. 

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.

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.