East London Genes and Health

Project Summary

The East London Genes and Health (ELG&H) study aims to improve the health of people of British-Pakistani and Bangladeshi heritage by analysing the genes and health of 100,000 local people. The project is sponsored by Queen Mary University of London, and jointly led with Barts Health NHS Trust.

The DDS Genes & Health data extract provides relevant health record data information from patient GP electronic health record (with the consent of the GP practice data controllers in four CCGs - Newham, City and Hackney, Tower Hamlets and Waltham Forest). Data from three outer London CCGs (Barking, Dagenham, Redbridge) is expected shortly. Secondary care and national NHS Digital datasets may be provided in the future.

Genes & Health volunteers have given lifelong written individual consent for the study, and access to their health records. The study is supported by the MRC, Barts Charity, Wellcome and the NHS NIHR.

The research aims are to study:

• how genes normally vary from person to person in the adult Bangladeshi and Pakistani communities. Knowing what is normal is very important when searching for genes causing certain childhood diseases.
• genes in people with very high and very low cholesterol levels, to better understand why heart disease and stroke occur. Genes & Health has already identified individuals with familial hypercholesterolemia and initiated treatment to prevent early heart attack.
• variation in genes in healthy adults whose parents are related. These studies will tell us how genes work (especially knockouts), and help develop new medicines and treatments. Genes & Health has already identified and supported a new treatment for the rare disease primary hyperoxaluria.
• genes of people with diabetes, aiming to identify rarer types of diabetes for which specific treatments might be used.
• how some people respond differently to certain medicines.

Project population

GP records available within the following CCGs: Tower Hamlets, Newham, Waltham Forest and City & Hackney.

Project cohort

50,000 adult volunteers of British-Pakistani and Bangladeshi heritage (as at 2020). Planned 100,000 volunteers by 2023, recruitment ongoing.

Project criteria

Primary care diagnoses, problems, clinical measurements, laboratory measurements, prescribing information on volunteers.

Data state

Patient identifiable.

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