European Registries for Rare Endocrine and Bone Conditions

06/02/2026
22/05/2026
Data source
Human
Disease registry
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Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
Overview of EuRREB's governance

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

Yes

Description of data collection

Data is collected via an in-house built web based application. The project consists of two platforms: e-REC, a light touch platform collecting only the number of new cases seen at the healthcare provider; the Core Registry, a platform that collect the set of Common Data Elements and other Core Data fields. Additionally, the Core Registry collects generic and disease-specific outcomes in the shape of PROMs and condition-specific modules. Data can be entered by clinicians and patients.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

Event triggering de-registration of a person in the data source

Other

Event triggering de-registration of a person in the data source, other

Patient withdraws consent
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

No
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Required for general use

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

No

Data source preservation

Are records preserved in the data source indefinitely?

No

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No