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Amendment June 2024: PIC template English (GDPR) version 4.0
Other documents possibly needed in the context of this amendment, i.e., the study protocol version 3.0 as of June 2024 and the center agreement version 4.4 as of August 2024, will be provided to center representatives upon request.​

Before entering patient data into the ESID Database you have to obtain an informed patient consent (PIC). Patient consent forms containing information on the ESID Registry are available here in many languages.

Please note that on principle these forms need to be approved by a competent (Research) Ethics Committe or IRB according to your (local) regulations before use!

Please do not use versions with note ‘NEEDS EC APPROVAL’ yet.

Informed patient consent with prefix GDPR and date are versions in accordance with the regulations set forth by the GDPR.

For all the others, please see version and date of each form by selecting the files. These are outdated and only listed here for your reference. For all new registrations please use only GDPR compliant versions to get the patients’ consent.

GDPR compliant PIC language (country, centre) versions

Czech version (EC Brno, Version 3.01, 23.02.2021, to be used only for centre Brno, revised version for Brno, based on Czech version 3.01) 

tbc

United Kingdom uses PIC forms approved by national authorities for UKPID Registry!

Instructions how to handle the supplement to data protection

Please find here the procedures to handle the supplement to data protection:

Language and country specific versions of the supplement to data protection

Please find here a list of available language versions of the “Supplement to data protection”.

Spanish and Catalan versions provided by Pediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP):

Obsolete PIC versions (obsolete consents, may be used as reference or for information purpose, for special use please see below)

These PIC-Forms may only be used in combination with a respective, Swiss specific addendum, similar to the Supplement to data protection. Final decision on how to proceed regarding GDPR in Switzerland is pending

Chairperson WP Registry (2022-2026)

Prof. Markus G. Seidel