Registry Working Party

ESID Registry

User manual and FAQ

A concise guide to the new ESID Registry, plus the latest FAQ!

List of diseases and genes

This list gives an overview on the diseases in the Registry and available genes for each disease. Please, have also a look in the menu on the left at ESID Diagnosis criteria.

Application Forms

New centers should fill in the Agreement between the center and ESID
and new users of the ESID registry the password application.

ESID Questionnaires

This section provides questionnaires that can be applied to patients and physicians to collect the necessary data items for the new ESID Registry.
The questionnaires correspond to the level 1 of the new ESID Registry.
For explanation of the different fields of the questionnaire, please check the corresponding datasets.
Questionnaires for level 2 ( unPAD study) are preliminary for the time being and only in English available. Please refer to the dataset, too.

Datasets and driving questions

This section contains technical documents on the new ESID Registry; in particular, the complete Level 1 dataset with field definitions and driving questions as well as the Level 2 dataset ( unPAD study).

EC Contract for transfer of data to third countries

This contract has to be completed by documenting centres outside of the EU and EFTA in addition to the Agreement with ESID.

The redesign of the ESID Registry in 2013

A summary explaining the development and design of the new ESID Registry

Registry Update

More than 28,000 #patients with #PID in the ‪@ESIDsociety #REGISTRY. The largest #database in the world for #PrimaryImmunoDeficiencies!
Thank you to every documenting centers across #Europe. More will join soon  pic.twitter.com/JyUAMZ0Fky

NEWS on Registry Call 2018

Dear colleagues,

In 2018, the ESID Registry WP renewed its call to support national registries and individual documenting centres in your invaluable work associated with the documentation within the ESID Registry.

Stipends of up to 5,000 Euro for 1 year only will be provided on a competitive basis for projects dedicated to this issue.

Wishing you a nice summer.

Best regards to all,

Nizar MAHLAOUI​

This call is CLOSED!

Awardees are individually contacted for the further proceedings.