Registry Working Party
Informed Patient Consent
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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 These are outdated and only listed here for your reference.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
Arabic (Cairo, Version 3.01, 17.02.2020, translated from English Version 3.01)
Armenian (NEEDS EC APPROVAL, Version 3.01, 28.10.2019, translated from German Version 3.01)
Bulgarian (EC Sofia, Version 3.01, 25.11.2019, translated from German Version 3.01)
Croatian (EC Zagreb, Version 3.01, 25.05.2020, translated from German Version 3.01)
Czech version (EC Prague, Version 3.01, 30.03.2020, translated from German Version 3.01)
Dutch (NEEDS EC APPROVAL, Version 3.01, 17.03.2020, translated from German Version 3.01)
English (NEEDS EC APPROVAL, Version 3.02, 24.09.2019, revised version translated from German Version 3.01)
English (To be used only for centre Dublin, EC Dublin, Version 3.01, 10.10.2019, revised version translated from German Version 3.01)
French (NEEDS EC APPROVAL, Version 3.01, 24.07.2019, translated from German Version 3.01)
French_CEREDIH (NEEDS EC APPROVAL, Version 3.02, 09.12.2020, revised version for CEREDIH (France))
French_Geneva (EC Geneva, Version 4, 18.01.2021, revised version for Geneva University Hospital)
German (EC Freiburg: Version 3.01, 03 June 2019)
German_Giessen (To be used only for centre Giessen: EC Giessen, Version 3.00, 21 May 2019)
German_Munich (To be used only for centre Munich: EC LMU Munich, Version 3.01, 24 July 2019)
German_Austria (To be used only for Austria!, Austrian Version, EC Graz: Version 4.1, 22 July 2019)
German_Switzerland (To be used only for Kinderspital Zurich, Swiss Version, EC Zurich: Version 11/20, 09.11.2020)
Greek (EC Athens, Version 3.02, 22.11.2019, translated from English Version 3.02)
Hebrew (NEEDS EC APPROVAL, Version 3.01, 12.09.2019, translated from German Version 3.01)
Italian (EC Milano, Version 3.02, 24.09.2020, translated from English Version 3.02)
Persian (RCID-TUMS, Tehran, version: 3.01, 13.07.2020, translated from English Version 3.01)
Portuguese (NEEDS EC APPROVAL, Version 3.01, 06.02.2020, translated from German Version 3.01)
Polish (EC Warsaw, Version 3.02, 24.09.2019, translated from English Version 3.02)
Russian (EC Minsk, Version 3.01, 24.08.2019, translated from German Version 3.01)
Slovak_Bratislava (EC Bratislava, Version 3.01, 08.07.2020, translated from German Version 3.01, adapted for Bratislava)
Slovak_Martin (EC Martin, Version 3.01, 01.10.2020, translated from German Version 3.01, adapted for Martin)
Slovenian (EC Golnik, Version 3.01, 03.12.2019, translated from German Version 3.01)
Spanish (EC Barcelona, Version 4, 02.10.2020, translated from Revised English Version 3.02)
Turkish (EC Samsun, Version 3.01, 04.04.2020, translated from German Version 3.01)
United Kingdom uses PIC forms approved by national authorities for UKPID Registry.
Ukrainian (NEEDS EC APPROVAL, Version 3.01, 25.10.2019, translated from German Version 3.01)
GDPR_ESID_Registry_PIC_UKRAINIAN_3.01_2019_10_25
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Instructions how to handle the supplement to data protection
Please find here the procedures to handle the supplement to data protection.
English
German
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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".
Arabic
Armenian
Austria
Czech
Dutch
Dutch adapted for Leuven
English
Farsi
German (not to be used in Austria or Switzerland!)
German (for Switzerland only)
Italian
Polish
Spanish and Catalan versions provided by Pediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP):
Russian
Romanian
Turkish
Ukranian
Portuguese version will be provided soon.
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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
Last update: 2021-01-29
