Registry Working Party

ESID Registry

User manual for the ESID Registry

A concise guide to the new ESID Registry!

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).

Historic: The redesign of the ESID Registry in 2013

A (historic) summary explaining the development and design of the new ESID Registry