CFAS brain donation cohort bioresource and fieldwork activity
Research type
Research Study
Full title
Cognitive Function and Ageing Study (CFAS) brain donation cohort bioresource and fieldwork activity
IRAS ID
147624
Contact name
Carolyn Read
Contact email
Sponsor organisation
University of Cambridge
Research summary
Research Summary
The Cognitive Function and Ageing Study (CFAS) is a large population based epidemiological study which began in 1989 involving people over the age of 65 years in six centres of Britain including Liverpool, Newcastle, Nottingham, Oxford, Cambridge and Gwynedd.
Over 18,000 people were initially recruited to the study and conducted over 48,000 computer based interviews over a 20 year period which has increased our knowledge on the onset, course and risk factors for dementia and related conditions in the older population as well as healthy and frail ageing.A number of CFAS participants kindly agreed to brain donation with over 560 successful donations to date. We would like to re-approach those remaining study participants (n=47) who agreed to consider possible future brain donation to conduct a further interview to assess how their health has changed since we last visited them in 2011. Subject to future funding we would hope to continue to interview this cohort at two yearly intervals until the end of their life and possible subsequent brain donation. If we are informed of the death of a study participant we will arrange the brain donation at one of the study centres as per Human Tissue Authority (HTA) guidelines.
Previously participants have consented to us having access to their medical records but as systems have evolved regarding access to health records these consents are deemed no longer acceptable, the Health and Social Care Information Centre (HSCIC) have requested we reconsent these participants in order for them to continue to provide the study with death notifications. We propose during the re-interview process to seek participants’ permission to update their original consent and allow us to flag their name at the Health and Social Care Information Centre (HSCIC) and therefore be informed of their date and cause of death.
Summary of Final Report
Although this phase of the study was finished years ago i.e. approaching the participants for further interviews in 2015, work has been ongoing on the donated brains and there have been many publications since then. The only remaining activity for this study was the visits to interview (with continuing reconsenting each time) those taking part in the brain donation component.REC name
Wales REC 4
REC reference
15/WA/0035
Date of REC Opinion
5 Feb 2015
REC opinion
Further Information Favourable Opinion