Data Linkage in the NICOLA study
Research type
Research Study
Full title
Data Linkage in the Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA)
IRAS ID
322052
Contact name
Frank Kee
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
4 years, 11 months, 29 days
Research summary
The Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA) is a public health study involving men and women aged 50 years and over living in Northern Ireland who are voluntarily being followed up over time (baseline recruitment was ~8500 participants). The study aims to provide information on the health, social and economic circumstances of participants as they grow older and how their circumstances change with age. The primary objective is to collect longitudinal data on physical and mental health and well-being, disability, economic circumstances, social participation and connectedness as people plan for, move into and progress beyond retirement. Waves 1 and 2 of the study have been completed and Wave 3 is due to commence within the next 6-12 months. Information is obtained via computer-assisted personal interviews and self-completion questionnaires. Interviews take place approximately every 2 years. Participants also take part in a health assessment approximately every 4 years.
This application is to seek permission to i) carry out data linkage of NICOLA data with routinely collected anonymised health and social care data held within the Business Service Organisation (BSO) and Honest Broker Service (HBS) for Health and Social Care and ii) to carry out data linkage of NICOLA data with cancer registration records and cancer related data held within the Northern Ireland Cancer Registry (NICR). This would enable verification of self-reported morbidity data and allow us to track changes in participant status including for example those who have had hospital treatment, changes in medications or have taken part in health screening etc. This data will enhance the value of the NICOLA data resource and facilitate expansion of our research in answering key research questions relating to ageing. Participants have already given consent (via 'opt out' consent) for their data to be linked.
REC name
Wales REC 7
REC reference
23/WA/0129
Date of REC Opinion
17 Apr 2023
REC opinion
Further Information Favourable Opinion