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.
The big news this month is the publication of the project web site. The purpose of the site is to be a node for communication around the EUROCRINE project, and to reach out to stakeholders interested in rare endocrine tumours.
So far, the web site contains facts about the project and partners, and with project progression, participating clinics will be added. The site is later going to contain a section for research, and also be a portal for accessing the database.
The companies behind the web site, made on the Drupal platform, are CHIMNEY/SCANDVISION, subcontracting LIXION for the technincal construction, and last but not least GIV AKT who designed the logotype and colours. www.eurocrine.eu.
On December 11-12, the first workshop with the associated and collaborating partners took place at Amsterdam Airport Schiphol. This was our first get-together after the start-up of the project in September 2013.
The meeting main purpose was to define the variables concerning rare endocrine tumours to be collected by the database. A set of core variables for all endocrine surgical procedures will be registered by participating clinics. There will also be an extended set of variables to cover the need of more thorough statistics, put forward by some of the partners. In addition to this collected core data set, specific information will be collected for the thyroid, parathyroid, adrenal, and GEP-NET tumours.
One of the main issues that was discussed is patient data security. The current model implies replacing patient identification locally to an anonymous code before a post is transferred to the global database. Even though de-identified data will be used, authorization is required, and the rules are different in every country. The personal identification will be kept by those who already are authorized to handle the personal data of the patient. The patient ID approach is also a measure to keep the door open for more countries to affiliate in the future.
Other issues handled are general data security, procurement, software requirements, and output.
The next meeting of the steering committee on March 17 will define test centres and plan for database testing. Another issue will be preparations for EUROCRINE going public at the European Society of Endocrine Surgery (ESES) Biennal Scientific meeting in Cardiff in May.