The Office for Rare Conditions Registries (ORC Registries)

02/03/2026
02/03/2026
Institution
Educational Institution
Non EU Institution/Body/Agency
Non-Pharmaceutical company
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Institution identification

Institution ID

1000000905

Institution full name and acronym

The Office for Rare Conditions Registries (ORC Registries)

Institution countries

United Kingdom

Type of institution

Educational Institution
Non EU Institution/Body/Agency
Non-Pharmaceutical company

Institution role

Data holder
Data provider
Researcher

Institution website

ENCePP partner

Yes
Institution description
The Office for Rare Conditions Registries, is a University of Glasgow project, based at Child Health, which focusses on the developemnt and operation of registries for rare conditions. The project team has been involved in rare disease registries for two decades.

Amongst its portfolio are :
- SDMregistries for people with conditions affecting sex development and maturation.
- GloBE-Reg, a registry which supports post authorisation studies for new therapies for bone and endocrine conditions.




Institution details
Experience with collecting data directly from individual patients or respondents:
Yes
Interest in carrying out research that is funded by pharmaceutical companies:
Yes

Contact details

Studies conducted by the institution

This Institution does not have any study registered in the catalogue