Registry Working Party

Studies

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 29, 2016.

APDS Registry

The first ESID Registry level 3 project.

Currently recruiting!

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

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. 

CGD Study

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

Primary selective IgM deficiency: Clinical and laboratory features (SIMcal)

Primary selective IgM deficiency: clinical and laboratory features.

Now recruiting.

Only LEVEL 1 documentation required!

Ataxia-telangiectasia (A-T) Study

Retrospective analysis of ESID-Registry data.

Chest CT in antibody deficient patients

The Chest CT in Antibody Deficiency Group is an international and interdisciplinary group that works together to improve pulmonary diagnostics in patients with antibody deficiency syndrome.