The EUROCRINE project aims to decrease morbidity and mortality of rare endocrine tumours, by means of a pan-European database.
Recording and accessing data at the European level, makes it possible to identify these tumours, which cannot be distinguished at local or national level, because of their extreme rarity.
Dissemination of results aims to raise clinical standards and reduce differences in practise between clinics and member states, and thereby diminish morbidity and mortality. Comparison of practice and outcomes will be especially interesting for centres wanting to improve their standards to what is currently considered best practice.
EUROCRINE will be a key means by which the medical profession, researchers, health policy makers, and not least patients, can benefit from an increase in knowledge related to diagnosis, treatment, and future clinical research in the field of rare endocrine tumours.
Only de-identified data content will be handled in this registry.
Methods and means
The EUROCRINE project is implemented in a 39 months project financed by the Health Programme of the European Union and Region Skåne, the southernmost region of Sweden.
- Analysis will be performed to review and determine relevant variables to be captured, fulfilling the requirements in the member countries, and also for the design of the database.
- A database will be developed to facilitate collection and extraction of data in a secure and efficient way.
- Statistical evaluation of data will be performed, including comparative data for participating countries.
- A plan will be elaborated for sustainability of the database, in terms of administration and finance.
The project goal is a web-based data entry registry for rare endocrine tumours, with data from clinics across Europe. The database is expected to include all major university surgical departments from the countries of associated partners.
This web-site is meant be a node for patients, patient organizations, doctors and departments who care for rare endocrine tumours, and also be a portal for database access.
The results of the statistical evaluation of joint health data will be presented and discussed at a specific conference for all stakeholders and disseminated through this web-site. Evaluation on standards of care for surgically treated rare endocrine tumours will emanate from these results, and result in recommendations for best practice.