The Registry

About EUROCRINE

EUROCRINE is an endocrine surgical quality registry which aims to decrease morbidity and mortality in endocrine tumours, with a special focus on rare tumours, by means of an international database based in the EU. 

Specifically, the registry collect data to analyse diagnostic processes, indication for surgical treatment, type of surgical procedures, use of resources and outcomes. Data for quality control is analysed at the local hospital level, and on an aggregate national and supranational level. Data is also used for clinical research and to identify and disseminate best clinical practice.

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.

EUROCRINE was started as a project within the Health Programme of the European Union 2013.
As of September 8, 2018, Eurocrine© is registered as a not for profit organisation organized and duly registered under the laws of Austria for societies (date of registration 2018-09-06), with registration number 5478-146678. Eurocrine is managed by a board represented by participating national endocrine surgical societies and the European Society of Endocrine Surgeons (ESES). The owner of the platform is Region Skåne, the County Council of Scania Region in Sweden.

What are the benefits in participating in EUROCRINE?

By collecting data, you will be able to monitor your own results over time and compare your results with other clinics.

EUROCRINE provides means to audit surgical results and encourages surgeons to make adjustments to their practice and improve outcomes.

Participation gives you access to define your own data to collect, and to analyse outcomes with Excel output or in Microsoft Power BI. You will join a network of clinics and departments devoted to improve clinical practice. By joining EUROCRINE, you also have the opportunity to take part in important clinical research projects within the field.

What are the cost?

EUROCRINE is a member registry mainly funded by participating clinics and member organisations. The annual cost for participating is decided by the EUROCRINE board on a not-for-profit basis. For more information please contact the EUROCRINE office.

Who has access to the data?

Each participating clinic and participating national society has free access to their own data, to monitor quality of care within the aim and scope of the registry. The EUROCRINE board has access to global data and has the right to analyse and publish results from aggregated data. 

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 information and testing.

When can I start?

Your clinic can start in the EUROCRINE registry when the legally responsible person in your hospital hierarchy has signed the agreement allowing you to participate with data. It could be that you will need authority approval from your national health authority or ethics committee before you can start.

How much time does it take to enter the data?

It depends on the diagnosis and if a tumour is benign or malignant. There is less data to collect for a benign common diagnosis, than for a malignant tumour with a rare diagnosis.

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.

Can I work in my own language?

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.

Technical aspects

Patient or personal identification data is not stored within the EUROCRINE database. The entries are stored on a serial number (pseudo anonymization). The information about which patient corresponds to which serial number is stored by the clinic itself. It can either be stored inside the clinic firewall in a local app available for participants, or in any way the clinic finds best. For more information on technical aspects, please register your interest of participation, and this 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, unless national legislation covers this data entry, 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 lodge a complaint
• how to withdraw your consent, if given
• the contact details of the organisation responsible for processing your data and their Data
   Protection Officer if there is one.

For further information on patient´s rights according to GDPR, please see the drop-down menu “Patients”.