Registry Working Party

Studies

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:

GLILD, (Extension of the data fields for ILD in PID in the ESID registry)

Extention to Level 1 for patients with ILD.

Currently under Revision (12/2023) by Study team.

Study on Hyper-immunoglobulin E syndrome (HIES) due to dominant-negative STAT3 mutations

 

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 from ESID-R and provided to the study team. Analysis pending (01/2024).

 

CHH-Study: Risk factors for mortality in cartilage-hair hypoplasia

Risk factors for mortality in cartilage-hair hypoplasia

Data has been extracted and provided to the study team. Analysis completed and manuscript submitted.

Manuscript accepted for publication as of 04/2024!