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 4/7/25
Office for Rare Conditions Registries Team
Professor S F Ahmed
Dr Salma Ali
Dr Salma Ali, is a Clinical Lecturer in Child Health and a GRID specialty trainee in Paediatric Endocrinology and Diabetes at the Royal Hospital for Children, Glasgow. Her research interests include rare disease registries and the use of routinely collected data for the assessment of outcomes in rare endocrine conditions such as Congenital Adrenal Hyperplasia. Salma is also a member of the SDMregistries Care Quality Improvement Committee and Project Management Group.
Updated 4/7/25
Dr Malika Alimussina
Dr Malika Alimussina, Clinical Scientist at the Office for Rare Conditions Registries, is responsible for data quality and standardising and analysing registry data, data visualisations, outputs for dissemination and liaison with ethics. Additionally, Malika contributes to the ongoing development of registries, ensuring effective data management and communication for research purposes.
Updated 4/7/25
Jessica Anderson
As a PhD student in the ORC registries team, Jessica's role focuses on research. Her current work centres on analysing data quality within rare disease registries, aiming to enhance accuracy and reliability within these registries.
Updated 4/7/25
Dr Jillian Bryce
Jillian Bryce is the Senior Project Manager in the Office for Rare Conditions Registries team, with 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 Office for Rare Conditions Registries team.
Updated 4/7/25
Dr Minglu Chen
Dr Minglu Chen is the Senior Project Support for the Office for Rare Conditions Registries. Minglu plays a key role in providing administrative support for both GloBE-Reg and SDMregistries projects. Minglu also coordinates with study investigators and collaborative centres worldwide, ensuring smooth project execution and global collaboration.
Updated 4/7/25
Dr Suet Ching Chen
Dr Suet Ching Chen, NRS Research Scotland Fellow.
Sanhita Koley
Sanhita Koley is the Data Scientist for the Office for Rare Conditions Registries team. Sanhita's role focuses on software development and maintenance of registry platforms. Sanhita leads database management activities, including data extraction and quality maintenance and ensures compliance with data governance standards, overseeing pseudo-anonymisation and the confidentiality of registry data.
Updated 4/7/25
Dr Angela Lucas-Herald
Dr Angela Lucas-Herald, is the Senior Clinical Lecturer for Child Health. Angela specialises in Paediatric Endocrinology and has worked with SDMregistries projects since 2015, with a particular focus on Disorders of Sex Development. Angela has designed, led and collaborated in numerous projects with the ORC Registries and is currently on the SDMregistries Learning and Training Committee and Project Management Group.
Updated 4/7/25
Martin McMillan
Martin McMillan, supports the Office for Rare Conditions Registries team by focusing on improvements in the quality of the management processes in SDMRegistries.
Updated 4/7/25
Chris Smythe
Chris Smythe is a senior developer in the Office for Rare Conditions Registries team, specialising in database and web user interface development to support a number of the team’s registry research projects.
Updated 4/7/25
Dr Joseph McElvaney
Dr Joe McElvaney is a Clinical Research Fellow at the Office for Rare Conditions Registries and post-foundation trainee whose role focuses on registry development, data management and data quality in the GloBE-Reg and SDMregistries Projects. He also collaborates and leads on research and quality improvement projects relating to the use of real-world data in rare endocrine conditions, especially congenital adrenal hyperplasia.
Updated 4/7/25
Sheila Shepherd
Dr Sheila Shepherd is a clinical data manager at the Office for Rare Conditions, Glasgow, Sheila uses the GloBE-Reg platform to enter real data on patients and advises the Office for Rare Conditions Registries team on improvements.
Updated 4/7/25
Yolanda Johnson
Yolanda Johnson, is a Senior Finance Administrator whose role focuses on supporting the smooth delivery of accurate and efficient financial services for the SDMRegistries team.
Updated 4/7/25