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

Abstract

PurposeThe 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.ParticipantsWe 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 dateThere 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 plansThe 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.

Type 1 diabetes incidence in Scotland between 2006 and 2019

“…Applying the algorithm to data for people with prevalent diabetes in 2010-2019 resulted in reclassification of approximately 1300 people with a clinical record of type 1 diabetes to type 2 diabetes and of approximately 3352 people with a clinical record of type 2 diabetes to type 1 diabetes. 32 It is possible that incidence of type 1 diabetes may be overestimated in 50+ year olds by implementing the algorithm. Increasing measurement of C-peptide and islet cell antibodies after a clinical diagnosis of type 1 diabetes is likely to improve classification of type of diabetes in the future.…”

“…There is scope for misclassification of diabetes type, particularly in adult populations, despite the application of an algorithm to improve the classification. Applying the algorithm to data for people with prevalent diabetes in 2010–2019 resulted in reclassification of approximately 1300 people with a clinical record of type 1 diabetes to type 2 diabetes and of approximately 3352 people with a clinical record of type 2 diabetes to type 1 diabetes 32 . It is possible that incidence of type 1 diabetes may be overestimated in 50+ year olds by implementing the algorithm.…”

Cardiovascular risk management among individuals with type 2 diabetes and severe mental illness: a cohort study

“…We performed a retrospective cohort study using data from the Scottish Diabetes Research Network National Diabetes Dataset [ 21 ]. This dataset contains information on diabetes-related care from primary and secondary care settings for >99% of those diagnosed with diabetes in Scotland since 2004 (based on cross-validation of diagnoses in primary care records against hospital admission and prescribing records by the Public Health Scotland data linkage team), linked to various routinely collected health datasets [ 21 ]. We included all adults with a primary or secondary care record of a type 2 diabetes diagnosis between 2004 and 2020, who lived in a Scottish health board region.…”

Severe Mental Illness and Type 2 Diabetes Outcomes and Complications: A Nationwide Cohort Study

“…This study uses data from the Scottish Diabetes Research Network National Diabetes Dataset (SDRN-NDS) (29). It is estimated that this dataset includes 99% of people diagnosed with diabetes in Scotland (29).…”

“…This study uses data from the Scottish Diabetes Research Network National Diabetes Dataset (SDRN-NDS) (29). It is estimated that this dataset includes 99% of people diagnosed with diabetes in Scotland (29). It is a broad dataset including information on, but not limited to, type of diabetes, sociodemographic characteristics, routine diabetes care including retinopathy screening and linked acute and psychiatric hospital records and death records (29).…”