Cohort profile: the Scottish Diabetes Research Network national diabetes cohort - a population-based cohort of people with diabetes in Scotland

Stuart J McGurnaghan* (Corresponding Author), Luke A K Blackbourn, Thomas M Caparrotta, Joseph Mellor, Anna Barnett, Andy Collier, Naveed Sattar, John McKnight, John Petrie, Sam Philip, Robert Lindsay, Katherine Hughes, David McAllister, Graham P Leese, Ewan R Pearson, Sarah Wild, Paul M McKeigue, Helen M Colhoun

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

PURPOSE: The Scottish Diabetes Research Network (SDRN)-diabetes research platform was established to combine disparate electronic health record data into research-ready linked datasets for diabetes research in Scotland. The resultant cohort, 'The SDRN-National Diabetes Dataset (SDRN-NDS)', has many uses, for example, understanding healthcare burden and socioeconomic trends in disease incidence and prevalence, observational pharmacoepidemiology studies and building prediction tools to support clinical decision making.

PARTICIPANTS: We estimate that >99% of those diagnosed with diabetes nationwide are captured into the research platform. Between 2006 and mid-2020, the cohort comprised 472 648 people alive with diabetes at any point in whom there were 4 million person-years of follow-up. Of the cohort, 88.1% had type 2 diabetes, 8.8% type 1 diabetes and 3.1% had other types (eg, secondary diabetes). Data are captured from all key clinical encounters for diabetes-related care, including diabetes clinic, primary care and podiatry and comprise clinical history and measurements with linkage to blood results, microbiology, prescribed and dispensed drug and devices, retinopathy screening, outpatient, day case and inpatient episodes, birth outcomes, cancer registry, renal registry and causes of death.

FINDINGS TO DATE: There have been >50 publications using the SDRN-NDS. Examples of recent key findings include analysis of the incidence and relative risks for COVID-19 infection, drug safety of insulin glargine and SGLT2 inhibitors, life expectancy estimates, evaluation of the impact of flash monitors on glycaemic control and diabetic ketoacidosis and time trend analysis showing that diabetic ketoacidosis (DKA) remains a major cause of death under age 50 years. The findings have been used to guide national diabetes strategy and influence national and international guidelines.

FUTURE PLANS: The comprehensive SDRN-NDS will continue to be used in future studies of diabetes epidemiology in the Scottish population. It will continue to be updated at least annually, with new data sources linked as they become available.

Original languageEnglish
Article number063046
Number of pages10
JournalBMJ Open
Volume12
Issue number10
Early online date12 Oct 2022
DOIs
Publication statusPublished - 12 Oct 2022

Bibliographical note

Acknowledgments
We acknowledge with gratitude the contributions of people with diabetes, NHS staff and organisations (the Scottish Care Information-Diabetes development team and Steering Group, the Scottish Diabetes Group, the Scottish Diabetes Survey Group, the diabetes managed clinical networks) involved in providing data, setting up, maintaining and overseeing collation of data for people with diabetes in Scotland. Data linkage is performed by colleagues at Public Health Scotland. We acknowledge the financial support of NHS Research Scotland (NRS), through Diabetes Network. The NHS Research Scotland Diabetes Network (formerly Scottish Diabetes Research Network) receives funding from the Chief Scientist Office of the Scottish Government.

Funding Work described here has been supported by Chief Scientist Office Scotland (Ref. ETM/47) and by Diabetes UK (Ref. 17/0005627)

Data Availability Statement

Data availability statement
The SDRN-EPI team welcomes external collaborative research proposals that use the research data platform. SDRN-EPI are not data custodians and are not permitted to directly provision data externally. However, the component datasets can be obtained by data governance trained bone fide researchers through the Public Benefit and PrivacyPanel for Health and Social Care. See https://www.informationgovernance.scot.nhs.uk/pbpphsc/ for how to apply.

Keywords

  • COVID-19
  • Diabetes Mellitus, Type 2/complications
  • Diabetic Ketoacidosis
  • Humans
  • Insulin Glargine
  • Middle Aged
  • Naphthalenesulfonates
  • Scotland/epidemiology
  • Sodium-Glucose Transporter 2 Inhibitors

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