Understanding participation and consent in CFAS (ERIC 1)
Research type
Research Study
Full title
Exploring Re-Consent in CFAS Pilot: Understanding participation and consent (ERIC 1)
IRAS ID
199512
Contact name
Helen Street
Contact email
Sponsor organisation
University of Cambridge
Duration of Study in the UK
0 years, 7 months, 13 days
Research summary
The 2013 G8 Global Dementia Summit identified some of the key priorities for dementia research as the better use of available data, resource sharing and researcher collaboration. Initiatives such as the MRC Dementias Platform UK (DPUK) and the European Prevention of Alzheimer’s Dementia (EPAD) speak to this agenda. Additionally these initiatives are specifically designed to facilitate a change in the focus of dementia research from observational cohort studies to intervention/diagnostic studies. This has implications for cohorts such as the current Cognitive Function and Ageing Studies (CFAS) which provide rich, longitudinal datasets and a group of participants already engaged with research. Specifically, it raises issues around the participation, consent and re-consent.
The CFAS studies are population based studies of individuals aged 65+ years living in the community, including institutions. The first CFAS study (MRC CFAS) recruited the baseline between 1990 and 1992 at six centres across England and Wales, with the initial aim of investigating dementia and cognitive decline. In 2008 CFAS II commenced on a new generational study involving 3 of the original sites in England, Cambridge, Nottingham and Newcastle. CFAS Wales began in 2011 to provide comparative data to that collected at the Welsh site in MRC CFAS.
This pilot project will use qualitative methods to explore current CFAS participants’ motivations for being involved in CFAS, their experience of participating and how they view the informed consent obtained for their participation. In-depth interviews with CFAS participants will be supplemented with observation of relevant CFAS meetings and interviews with key staff in CFAS to discuss these issues. The data collected will be thematically analysed and will inform a larger qualitative study. Another benefit of this pilot will be the opportunity to identify any potential practical problems with the study design that could be addressed before conducting a larger study.
REC name
London - City & East Research Ethics Committee
REC reference
16/LO/0972
Date of REC Opinion
17 May 2016
REC opinion
Favourable Opinion