Registry features

The EUROCRINE registry is a database customized for collecting data on endocrine tumours and procedures with emphasis on rare diagnoses.

Data collection

The EUROCRINE registry collects data on surgically treated tumours within the diagnoses groups thyroid, primary and secondary hyperparathyroidism, adrenal and GEP-NET tumours.

A central set of variables mandatory for all participants ensures data congruity. An additional data set is added at the national level. In addition, it is possible for a clinic to define and add their own local variables, and also share this dataset with other clinics.

 

 

Data storage

The collected data entries consists of a global and a local part.

Globally stored data

The global application handles most of the logic and the collected data, but do not handle the patient’s personal identification. All collected data is stored in the global application on a pseudo-ID representing the patient and operationration.

Locally stored data

Information concerning patient personal data and mapping between Patient-ID and pseudo-ID is stored and kept locally at the participating hospital and clinic.

For clinics who wish to keep their own mapping information separated from the global application, it is possible to register directly in the global database on a generated pseudo-ID.

A local application is offered, which seamlessly maps the local personal ID to the pseudo-ID for the entries in the global application. It contains name, identification number, and possibly other information about the patient identity.

My Eurocrine

The module My Eurocrine has dual purposes; to enable a clinic or hospital to define and collect their own data and to perform clinical studies.
With this feature you can create your own variables for collection of data, perform observational studies, and randomised controlled trials (RCT: s).

  • Create your own variables
  • Select the time frames
  • Define screening criteria
  • Set up inclusion and exclusion criteria
  • Attach documents (as required)
  • For RCT:s; automatic randomisation within the database
  • Invite other clinics to join
  • Immediate access to output data
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Output

Data output is available in three formats:

  • Dashboard on registered data and generic statistics on display inside the registry, as shown in the picture below.
  • All data entries in the Eurocrine are accessed directly by the user in Excel format.
  • Microsoft Power BI, which is the analytics service tool for EUROCRINE data.

 

Microsoft Power BI

Data collected in EUROCRINEis uploaded and available in the analysis tool Microsoft Power BI, with access for all national representatives. Also, clinic representatives with a special interest can get access to this tool, for analysis of the clinics local data. Microsoft Power BI is a licensed application. If you are specifically interested to obtain a license, please contact the EUROCRINE office for more information, including costs.