Global Registry For Novel Therapies In Bone & Endocrine Conditions

29/04/2026
29/04/2026
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).
globe-reg.net/about/

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

The Registry is a web-based interface linked to a secure database at the University of Glasgow which is managed and reviewed by Central IT Services. Reporters who are usually the health care professional at centres around the world apply for clinical contributor role-based access account for their centre and once approved they and their approved team members obtain local approvals to approach eligible cases at their own centre and add pseudonymized routinely collected data on clinical cases who provide consent. Data can also be uploaded using Bulk Transfer method available in the registry.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Start of treatment

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

Emigration
Loss to follow up
Practice deregistration

Event triggering creation of a record in the data source

New patient in the specialist clinic/centre or existing patients in the specialist clinic/centre who started to contribute data to the registry.
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?

Yes

Linkage description, pre-linked

The data is pseudonymized but there are potential data linkages. These linkages however are only available to the Registry team and not provided to any study PI.

Linkage description, possible linkage

Date of birth, Sex at birth, current gender.
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

Required for all studies

Possibility of data validation

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

Yes

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?

No

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

CDM Mappings