Registry Working Party
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.
New centers should fill in the Agreement between the center and ESID
and new users of the ESID registry the password application.
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.
This contract has to be completed by documenting centres outside of the EU and EFTA in addition to the Agreement with ESID.
A summary explaining the development and design of the new ESID Registry
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,
This call is CLOSED!
Awardees are individually contacted for the further proceedings.