Scottish linked diabetes register research database 2026
Research type
Research Database
IRAS ID
371435
Contact name
Sarah Wild
Contact email
Research summary
Scottish Diabetes Reseearch Network Epidemiology Group database
REC name
West of Scotland REC 4
REC reference
26/WS/0058
Date of REC Opinion
8 May 2026
REC opinion
Favourable Opinion
Data collection arrangements
Data collected during clinical care for people with a diagnosis of diabetes in Scotland are collated in the SCI-diabetes system. For research purposes extracts of data from SCI-diabetes are linked by the electronic Data Research and Innovation Service with data held by Public Health Scotland (PHS) including Scottish Morbidity Records, prescribing, renal registry, dental data and death records. Data extracts performed by the Scottish Diabetes Research Network (SDRN) programmer are sent using the NHS secure file transfer service to PHS who perform data linkage and return the unique study serial numbers for each individual to the SDRN programmer. The SDRN programmer extracts approved data fields from the SCI-diabetes database, adds the study unique serial number and Scottish Index of Multiple Deprivation score and quintile using postcode before removing names, full dates of birth (replacing with month and year of birth), addresses and CHI numbers from the SCI-diabetes extract. The pseudonymised data tables are released to the research programmer as encryped files. The PHS team also produce and release pseudonymised data extracts to the research programmer. Pseudonymised PHS data and SCI-diabetes data extracts are held on the research platform and can be linked by approved researchers using the study serial numbers.
Research programme
The Scottish diabetes research network epidemiology group is a collaboration across Scottish universities and the NHS of people who share core research and clinical interests in diabetes. The group was set up in 2007 to support creation and appropriate use of a national diabetes research database. Ethical approval for use of these data for research has previously been obtained in 2008, 2011 and 2021. Caldicott guardian approval was obtained from all Health Boards in 2008 and 2011 and Public Benefit and Privacy Panel (PBPP) approval obtained originally in 2016 and renewed in 2023. Publications from the group can be identified by searching for “Scottish Diabetes Research Network epidemiology group” in PubMed (www.pubmed.gov). The continuing approval of the research database will support research topics of interest such as the evaluation of effectiveness of new technologies for managing diabetes such as insulin pumps and flash glucose monitoring, further assessment of the relationship between mental illness, diabetes and its complications, describing complications of diabetes in pregnancy, investigating patterns of diabetes remission, use of machine learning approaches to improve and mitigate bias in risk prediction models, comparison of diabetes epidemiology between Scotland, England and Wales and evaluation of effectiveness and side effects of diabetes drugs.
Research database title
Scottish Diabetes Reseearch Network Epidemiology Group database
Establishment organisation
University of Edinburgh
Establishment organisation address
Old College
South Bridge
Edinburgh
EH8 9YL