Aim of the registry
Collection and analysis of data aims to raise clinical standards of care and reduce differences in practice between participating clinics and countries, and thereby diminish morbidity and mortality.
Cost for participation
Eurocrine is a member registry mainly funded by participating clinics and member organisations. The annual cost for participating is decided by the Eurocrine council on a not-for-profit basis. For more information regarding the current annual fee, please contact the Eurocrine office.
Access to the data
Participating clincs and participating national societies have access to their own data, to monitor the quality of care within the aim and scope of the registry. The Eurocrine council has access to global data and analyse and publish results from aggregated data. These analysis are shared with the members on annual basis and by standard reports.
Technical requirements for participating
The Eurocrine platform supports most common web browsers such as Firefox, Opera, Safari, and Explorer 9 or later. If you are uncertain if your web browser is compatible with the database, please contact the Eurocrine office for further information.
How to start
Your clinic can start registration in the Eurocrine registry when the legally responsible person in your hospital hierarchy has signed the agreement allowing you to participate with data. Further, the annual fee should have been paid. Depending on local regulations, it may be that you need approval from your national health authority or the local ethics committee.
Time to enter the data
The exact time to register an operation depends on the diagnosis and if a tumour is benign or malignant. There is less data to collect for benign common diagnosis, than for a malignant tumour and rare diseases.
The software is designed to be self-instructing and user friendly. Much of the information is hidden and will show up when certain choices has been made.
Eurocrine is at the moment available in the following languages: English, French, German, Italian, Polish, Spanish, Swedish, and Turkish. Additional languages may be added subject to agreement with participating clinics and partner societies.
Patient or personal identification data is not stored within the central Eurocrine database. The entries are stored on a serial number (so-called pseudo anonymization). Information on which patient corresponds to which serial number is stored by the local. This information can either be stored inside the clinic firewall in a local app which is available for participants, or in any way the clinic finds best (Excel spread sheet or paper). For more information on technical aspects of the database, please register your interest of participation, and further detailed information will be sent to you.
General Data Protection Regulation (GDPR)
As of May 25, 2018, the Eurocrine database operates under the GDPR, including national implementation of this legislation. Among other things, the patient has to be informed about the registration of their personal data and give explicit informed consent for what purposes their data will be used. This includes:
• the legal basis for processing personal data
• how long data will be stored
• with whom data will be shared
• basic data protection rights
• whether data will be transferred outside the EU
• the right to file a complaint
• how to withdraw your consent
• the contact details of the organisation responsible for processing your data and their Data Protection Officer.
For further information on patient's rights according to GDPR, please see the menu point “Patients”.