Registry

New ESID Registry

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Application Forms

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

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.

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).

New 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.

The redesign of the ESID Registry

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

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.