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 7/10/2024
Office for Rare Conditions Registries Team
Professor S F Ahmed
Dr Salma Ali
Dr Malika Alimussina
Dr Malika Alimussina, Clinical Scientist at ORC Registries, is responsible for data quality and standardising and analysing registry data, data visualisations, outputs for dissemination and liaison with ethics. Additionally, she contributes to the ongoing development of registries, ensuring effective data management and communication for research purposes.
Jessica Anderson
Dr Jillian Bryce
Jillian is a Senior Project Manager in the ORC Registries team. She has over a decade of experience working on international registries for rare endocrine and bone conditions including SDMregistries, GloBE-Reg and EuRRECa. Jillian oversees the activities of the widening ORC registries team.
Dr Minglu Chen
Dr Minglu Chen, Senior Project Support, Office for Rare Conditions (ORC) Registries.
Minglu Chen plays a key role in providing administrative support for both GloBE-Reg and SDMregistries projects. she also coordinates with study investigators and collaborative centres worldwide, ensuring smooth project execution and global collaboration.
Dr Suet Ching Chen
Dr Suet Ching Chen, NRS Research Scotland Fellow.
Sanhita Koley
Sanhita Koley's role as Data Scientist for the ORC Registries, focusses on the development of the registry platforms and its data governance. Sanita also plays a leading role in data management including data extraction, pseudoanonymisation and analysis.
Dr Angela Lucas-Herald
Dr Angela Lucas-Herald, Senior Clinical Lecturer.
Martin McMillan
Martin supports the ORC Registries team by focussing on improvements in the quality of the management processes in ORC Registries.
Chris Smythe
Chris Smythe, Registry Development, Office for Rare Conditions (ORC) Registries.
Sheila Shepherd
As a clinical data manager at the Royal Hospital for Children, Glasgow, Sheila uses the GloBE-Reg platform to enter real data on patients and advises the ORC Registries team on improvements. As a data and trial manager, Sheila has extensive experience of entering data into several registries including EuRRECa.