Documentation guidelines, questionnaires and further important documents and forms for registered users of the ESID Database.
ESID Online Database Manual (318k)A guide to the core documentation in the ESID Online Database.
Last updated Feb 23, 2011
Reporting Tool Manual (128k)An introduction to using the ESID Database Reporting Tool.
Last updated Oct 1, 2009.
For collecting the patient data necessary for the ESID Online Database, it is often helpful to use paper questionnaires.
We have developed standardised questionnaires which help to collect data on quality of life parameters in particular. These are available for download here. We are working on translations so the questionnaire can be applied in as many countries as possible.
We recommend that a nurse or doctor assists the patient while filling in the questionnaire. The baseline questionnaire should be filled in before the patient is first registered in the Database. For all following visits, please use the follow-up questionnaire.
(Last updated on January 4, 2011)
Baseline questionnaire (English) (35k)Follow up questionnaire (English) (33k)Baseline questionnaire (German) (239k)
Baseline questionnaire (German) (444k)Follow up questionnaire (German) (47k)Follow-up questionnaire (German) (443k)Follow up questionnaire (Polish) (151k)Translated by Dariusz Soldacki (Dec 2010)
It is possible to work with the database as a personalised system.
Personalised version (3924k)Information on the personalised version of the ESID Database and important documents: (1) Application to switch to the new version, (2) updated informed patient consent and (3) technical description.
If you have decided to switch from the coded to the personalised version, please download the following form.
Application to switch to personalised ESID Database (39k)This form has to be completed for documenting centres who want to change to the new personalised ESID online database
In order to keep patient data secure, we ask all users to observe the instructions given in the following data protection tutorial.
This contract has to be completed by documenting centres outside of the EU and EFTA in addition to the Agreement with ESID. The contract has been filled out by us so just your head of institute with address is required on page 4, initials on page 6, your signature is required on page 8 and data protection officer with contact details should be entered on page 11. Please forward any queries to registry@esid.org
EC Contract for the transfer of data to third countries (85k)This contract has to be completed by documenting centres outside of the EU in addition to the Agreement with ESID. The contract has been filled out by us so just your head of institute with address is required on page 4, initials on page 6, your signature is required on page 8 and data protection officer with contact details should be entered on page 11. Please forward any queries to registry@esid.org
Click here for Frequently Asked Questions
