Registry Working Party
New ESID Registry
New centers should fill in the Agreement between the center and ESID
and new users of the ESID registry the password application.
This list gives an overview on the diseases in the Registry and available genes for each disease.
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.
A summary explaining the development and design of the new ESID Registry
This contract has to be completed by documenting centres outside of the EU and EFTA in addition to the Agreement with ESID.