Office for Rare Conditions Registries
The Office for Rare Conditions-Registries, is a University of Glasgow project, based at Child Health, which supports the development of registries for rare conditions.
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.
In addition, the Office works closely with the EURRECa/ EuRR-Bone projects which were initially developed in Child Health and are now led by the Department of Medicine at the Leiden University Medical Center.
Updated 26/9/2024
Office for Rare Conditions Registries Team
Professor S F Ahmed
Dr Salma Ali
Dr Salma Ali, Clinical Lecturer, Office for Rare Conditions.
Dr Malika Alimussina
Dr Malika Alimussina, Research Assistant, Office for Rare Conditions Registry Support.
Jessica Anderson, Postgraduate Research Student
Dr Minglu Chen
Dr Minglu Chen, Senior Project Support, Office for Rare Conditions (ORC) Registries.
Dr Suet Ching Chen
Dr Suet Ching Chen, NRS Research Scotland Fellow.
Sanhita Koley
Sanhita Koley, Data Scientist, Office for Rare Conditions.
Dr Angela Lucas-Herald
Dr Angela Lucas-Herald, Clinical Lecturer.
Martin McMillan
Martin provides SDM registries quality work, monitoring current user login usage, creating and updating the registries' data dictionary. He is also involved in international centre benchmarking reports. Martin maintains SDM centre study folders used for registry studies between collaborating centres, as well as assisting in processing applications for the biennial Postgraduate Course in DSD.
Chris Smythe
Chris Smythe, Registry Development, Office for Rare Conditions (ORC) Registries.