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Data Access Register - full project summary

Application ID LLC_0042
Project Title Strengthening dementia epidemiology through improved record-linked ascertainment
Lead Applicant Dylan Williams
Organisation(s) Name(s) University College London
Approval Date 12/12/2025
Application Status Approved
Lay Summary

Dementia refers to problems affecting memory and other mental abilities. Dementia is becoming more common as the population ages. Dementia stems from several diseases affecting the brain; most commonly, Alzheimer’s disease (AD), which is thought to account for 50-70% of cases. A big cause of AD is a gene called APOE: perhaps more than 90% of AD would not occur without APOE’s contribution. Other things cause of AD, such as other genes and the environment in which people live. We need studies with thousands of people to find these other causes of AD. In such studies (cohorts and surveys) health measures have been collected over many years or decades, but we tend not to know which people have developed AD over time. This undermines our ability to detect and confirm causes of the disease. Here, we will put together a mix of health measures collected by cohorts and surveys alongside health records collected by the NHS. This will help us find more AD cases among study members. We will then see whether APOE shows a stronger link with AD when we look among a larger number of cases. This study will help us to find new ways of treating AD.

Datasets Requested

LPS Data:

  • English Longitudinal Study of Ageing (ELSA)
  • Extended Cohort for E-health, Environment and DNA (EXCEED)
  • Generation Scotland
  • National Survey of Health and Development 1946 (NSHD46)
  • TwinsUK

Linked Datasets:

  • NHSE: Mental Health Services Data Set (MHSDS)
  • NHSE: Civil Registration of Deaths Dataset (MORTALITY)
  • NHSE: Primary Care Medicines (PCM)
  • NHSE: Hospital Episode Statistics (HES) Accident and Emergency Dataset (HESAE)
  • NHSE: Hospital Episode Statistics (HES) Admitted Patient Care (APC) Dataset (HESAPC)
  • NHSE: Hospital Episode Statistics (HES) Augmented Care Periods (ACP) Dataset (HESAPC_ACP)
  • NHSE: Hospital Episode Statistics (HES) Maternity Dataset (HESAPC_MAT)
  • NHSE: Hospital Episode Statistics (HES) Outpatients Dataset (HESOP)
  • NHSE: Hospital Episode Statistics (HES) Critical Care (CC) Minimum Dataset (HESCC)
  • NHSE: Demographics Dataset (DEMOGRAPHICS)
Results & Impact