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The Secure Anonymised Information Linkage databank Dementia e-cohort (SAIL-DeC)
C Schnier1, T Wilkinson1,2, A Akbari3,4
1Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
A new national dementia e-cohort was created using UK healthcare data. This resource will aid researchers in studying dementia causes and outcomes, with 10% of participants developing dementia.
Area of Science:
- Epidemiology
- Public Health
- Gerontology
Background:
- Dementia presents a growing global health challenge, necessitating robust research into its etiology, progression, and impact.
- The Secure Anonymised Information Linkage (SAIL) Databank offers a unique, large-scale repository of anonymized Welsh healthcare data, ideal for longitudinal dementia studies.
Purpose of the Study:
- To develop a reproducible, national dementia electronic cohort (SAIL-DeC) from the SAIL Databank.
- To maximize the utility of the SAIL-DeC for diverse dementia research questions and minimize research duplication.
Main Methods:
- Utilized linked primary care, hospital admission, mortality, and demographic data from the SAIL Databank (up to 2018).
- Applied algorithms using International Classification of Diseases (ICD-9/10) and Read (v2) codes to identify dementia cases and subtypes.
- Included participants born between 1900 and 1958 with available primary care data, creating derived variables for comorbidities and risk factors.
Main Results:
- The SAIL dementia e-cohort (SAIL-DeC) includes 1.2 million participants, contributing 18.8 million person-years of follow-up.
- 10% (129,650) of participants developed all-cause dementia, with Alzheimer's disease being the most common subtype (62%).
- Median observation time for dementia cases was 14 years.
Conclusions:
- A generalizable national dementia e-cohort has been successfully established.
- The SAIL-DeC is poised to significantly facilitate epidemiological dementia research.
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