Identify best practice – Compiled data makes it possible to compare effectiveness in preoperative work-up, operation, surgical treatment, and outcome.
Benchmark yourself – Compare your outcome data with that of your country and the rest of Europe.
Start research projects – Collaborate across Europe in unique research projects.
Define variables to collect – Choose extra variables to collect and predefine lead texts, field types, formats, and value intervals.
Make your own surveys – collect extra data for groups of diagnoses within a certain time period, with the variables you create yourself
Take part in a European network.
Free of charge – Until the end of 2016, participation is free of charge, with no obligation to continue. From 2017, financed by membership fees (non-profit).
The work on the physical registry has been ongoing since August. The included disease modules for Thyroid, Parathyroid, Adrenal, Paraganglioma, and Neuroendocrine Tumours in the gastrointestinal tract (GEP-NET) have been developed, and are being β-tested by partners. Language functions for additional languages, apart from English, will be available. The registry will contain attractive out data modules. Time series for important medical data will make it possible to compare local user data (Department/Hospital), with National data and European Data. The dashboard after login, is partly shown in the picture below. A demonstration database will be available for presentation at meetings, and training via Webcast.
The launch in January 2015 is planned to start with a smaller number of departments, adding on new departments gradually.
For most European countries, the legislation requires specific permission to keep a register with personal information, and in some cases there are additional requirements for keeping patient records. Supporting documents for applications for your department and more information can be retrieved by contacting the coordinator of the project, email address below.
The next meeting of the steering committee for the project, is planned for December 4 in Frankfurt.
We would like to thank all of you who visited our booth last week at the 6th Biennial Congress of Endocrine Surgery. The purpose of our participation has been to spread the word about the project and to get in contact with future participants.
We have received more than 110 registrations for interest in participating in the registry, and in addition many have signed up for the newsletter.
For those interested, who have not yet signed up, it is possible to make the registration on this web-page.