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:
Extention to Level 1 for patients with ILD.
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 and provided to the study team.
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 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
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.
The first ESID Registry level 3 project.
The first journal publication resulting from this study has been published in 2018!
Please refer to the ESID Registry Publication list for further details.
Retrospective analysis of X-linked agammaglobulinemia (XLA) and autosomal recessive agammaglobulinemia (ARA) patients: Does early diagnosis and treatment result in substantial health gain?
Risk factors for mortality in cartilage-hair hypoplasia
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.
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).