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 the I-DSD/ I-CAH/ I-TS registries for people with conditions affecting sex development and maturation. The newly launched GloBE-Reg registry 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 9/2/2024
Office for Rare Conditions Registries Team
Professor S F Ahmed
Dr Jillian Bryce
Jillian is a Senior Project Manager in the Office for Rare Conditions (ORC) Registries. She has over a decade of experience working on international registries for rare endocrine and bone conditions including I-DSD, I-CAH, I-TS, EuRRECa and GloBE-Reg.
Dr Suet Ching Chen
Dr Suet Ching Chen, NRS Research Scotland Fellow.
Dr Angela Lucas-Herald
Dr Angela Lucas-Herald, Clinical Lecturer.
Dr Salma Ali
Dr Salma Ali, Clinical Lecturer, Office for Rare Conditions.
Dr Xanthippi Tseretopoulou
Dr Xanthippi Tseretopoulou, Clinical Research Training Fellow, Office for Rare Conditions (ORC) Registries.
Xanthippi is undertaking an MD at the University of Glasgow, under the supervision of Professor Faisal Ahmed. Her research interests include the use of real-world data and patient-reported outcomes with the aim of improving the patient care of rare endocrine conditions such as Differences of Sexual Development and Congenital Adrenal Hyperplasia.
Dr Minglu Chen
Dr Minglu Chen, Senior Project Support, Office for Rare Conditions (ORC) Registries.
Fatma Ashraf
Fatma Ashraf, Project Administrative Support, Office for Rare Conditions (ORC) Registries.
Chris Smythe
Chris Smythe, Registry Development, Office for Rare Conditions (ORC) Registries.
Dr Malika Alimussina
Dr Malika Alimussina, Research Assistant, Office for Rare Conditions Registry Support.
Sanhita Koley
Sanhita Koley, Data Scientist, Office for Rare Conditions.
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.