CFAS - Death notification of participants at HSCIC
Research type
Research Study
Full title
Cognitive Function and Ageing Study (CFAS) - Death notifications of CFAS participants at HSCIC
IRAS ID
163582
Contact name
Carol Brayne
Contact email
Sponsor organisation
Cardiff University Institute of Infection and Immunity
Research summary
The Cognitive Function and Ageing Study (CFAS) is a large population based epidemiological study which began in 1990 involving people aged over 65 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 that 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.
Participants who consented to take part in the study signed consent forms allowing the study access to their GP and other medical records, for the remaining un-consented sample, section 60 approval was granted in Nov 2003. Participants were flagged and traced with the Office for National Statistics (ONS) in order that the study be informed of the date and cause of death of participants.
As systems have evolved the access to medical records forms which participants signed are no longer deemed sufficient by the HSCIC who have requested the study re-consent all participants which is not practicable for many reasons including the advanced ages of participants, potential lack of capacity, inevitable attrition and lack of resources required for such an undertaking. The study has been informed if we do not receive permission from the Confidentiality Advisory Group (CAG) all data previously received will have to be deleted and will render 20+ years of publicly funded research unusable.
The participants gave their consent to participate in a longitudinal study and gave permission for access to medical records in good faith not anticipating future changes to governance arrangements. We request approval to continue to receive the death notifications from HSCIC and to be allowed to retain the data previously received for continuing analysis.REC name
Wales REC 7
REC reference
14/WA/1154
Date of REC Opinion
26 Sep 2014
REC opinion
Favourable Opinion