MRC Cognitive Function and Ageing Study - CFAS II, plusMaintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales)
University of Cambridge · Academic
Expired The latest version ended on 12 September 2022. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-147034-XH3H2
- Latest version
- v4.3
- Term of latest version
- 13 September 2021 to 12 September 2022
- Start date
- Before 24 August 2018
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 32
Why the data was released
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period. This is a pragmatic approach to permit retention of the data whilst enabling the University of Cambridge to complete the necessary actions to enable a subsequent application to extend the Agreement meeting all applicable data sharing standards as published in NHS Digital’s website (see: https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance).
Under previous iterations of this Agreement, the University of Cambridge received the date and cause of death data of participants of the Cognitive Function and Ageing Study II (CFAS II) and CFAS Wales.
CFAS II and CFAS Wales are longitudinal population based epidemiological studies of people over the age of 65 years. These studies were built on the design of the original CFAS study which began in 1989 and was based in six centres in the UK: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd. The study recruited over 18,000 people and conducted in excess of 48,000 interviews over a period of more than 25 years which has provided sound evidence generated by high quality population based research to advance understanding of health and health changes with age. The study links fields from policy through to molecular epidemiology.
CFAS II is a new generational cohort of people aged 65 years and older who were recruited between 2008 - 2011 at three of the original CFAS study centres - Cambridge, Newcastle and Nottingham. The study recruited 7500 people and conducted a baseline and two year follow up interview. The study was funded by the Medical Research Council (MRC). The study has provided important information on people aged 65-84 in 2007-2008 who will reach the age of greatest frailty during the 2020’s. The information gathered will increase knowledge on the onset, course and risk factors for dementia and related conditions as well as healthy and frail ageing.
CFAS Wales, funded by the Economic and Social Research Council (ESRC) includes the original CFAS centre of Gwynedd but also an additional centre in Swansea. Over 5,000 people were recruited to the study. A baseline (2011-2014) and two year follow up interview were conducted.
Data collected included: Demographics, lifestyle variables, health status, functional limitations, cognitive function, depression, dementia and anxiety, hearing and visual impairment. The CFAS Wales data adds to CFAS II in terms of sample size, but also includes a number of additional social science variables such as resilience, self-efficacy, social support, social capital, care needs and social networks including receipt of formal care, which will assist in extending and understanding the results obtained.
The study utilises date and cause of death of participants supplied by NHS Digital. The requirement of exact dates of death is important to ascertain the survival of individuals based on different conditions which can then be used in population modelling and public health outcomes. Specifically for example, the date of death will enable estimates of life expectancy for those who develop cognitive impairment between different waves of interviewing. Information is also required in relation to those leaving the NHS through emigration etc. in order to allow more accurate estimates of survival rates.
Processing activities
The University of Cambridge is the administrative centre for all the CFAS studies. The University of Cambridge maintains an administrative database containing participants’ identifying details and a separate pseudonymised database containing self-reporting information and data from tests (e.g. hearing tests) and from analysing samples (e.g. saliva, blood, etc.).
The University of Cambridge has previously supplied lists of identifiers for CFAS II and CFAS Wales participants to NHS Digital. This contained the name, date of birth, NHS number, postcode and a unique study identifier for each participant. NHS Digital linked that data and routinely reports details of participants’ deaths (date and cause) to the University of Cambridge.
No new data will be provided under this Agreement.
The data previously supplied by NHS Digital is held as identifiable data within the Secure Data Hosting Service (SDHS) at the School of Clinical Medicine, University of Cambridge.
Only the core CFAS team has access to the identifiable data held on the secure server. All are substantive employees of the University of Cambridge. Access to the SDHS is via a 15 character password and 2 factor authentication token. There is no internet access inside the SDHS. All data imported or exported to/from the SDHS is made via the secure transfer server. All transfers are audited. No identifiable data is ever released to collaborating researchers.
No data set with mortality information from NHS Digital will be transferred, with all analyses on mortality information undertaken solely within the core study team at the University of Cambridge. All outputs produced will be aggregated and anonymised with small numbers suppressed, in line with HES governance guidelines.
Mortality data is converted into binary indicators (i.e. deceased; not deceased) and those derivations are made more widely available along with other data collected by the CFAS II and CFAS Wales studies.
The data from NHS Digital will be used to model life expectancy, differentials between different diseases and causes of death. The use of exact dates of death will ascertain the survival of individuals based on different conditions and then be used in population modelling and public health policy outcomes.
The mortality data are linked with other data collected on the CFAS II and CFAS Wales cohorts and analyses of that data may be compared with equivalent analyses from the original CFAS study to assess changes in prevalence and incidence within the same geographical areas or variations across different areas.
Expected output
The Cognitive Function and Ageing studies (CFAS) include the original CFAS study (CFAS I) plus CFAS II and CFAS Wales) it has produced over 290 peer reviewed papers in high profile publications. All study papers can be accessed via the study website: www.cfas.ac.uk.
The study covers multiple areas including: population projections of risk, mortality, dementia prevalence and incidence, policy, healthy active life expectancy, social implications, pharmacology, mild cognitive impairment (MCI) and neuropathology.
In the past three years the study has led to the publication of an additional 30 academic papers, further papers are in draft, awaiting submission or awaiting acceptance by publications.
• The Newcastle DELIRIUM study based on hospital admissions of the CFAS Newcastle cohort concluded late 2017 it has produced 6 academic papers, with analysis ongoing and further papers planned.
• In 2020, CFAS concluded a Dementia risk reduction (Intervention) pilot study funded by Alzheimer’s Research UK (ARUK). CFAS II participants in Cambridgeshire, Newcastle and Nottingham took part to test feasibility, acceptability and adherence of the proposed intervention. The data has been collected, collated and a number of papers are currently with co-authors for review.
• During the COVID pandemic CFAS was funded by ARUK to conduct telephone interviews to assess the impact of the social isolation polices, implemented by the government on people over the age of 75 years with multi morbidities. Data collected included mental health and wellbeing, general health, isolation, social care usage and support received from others including family, neighbours, church, local authority, social groups etc.
The COVID-19 response relied heavily on connectedness through the internet, we explored participant’s access to and usage of technology to see to what extent there had been new usage as a result of the crisis and whether urgent need enabled new learning and acceptance of an unfamiliar technology. The data collection is completed, papers are in draft.
• UKRI-ESRC funded a second wave of CFAS telephone interviews with the aim of exploring the impacts of multiple lockdowns on this vulnerable group of people. Examining impacts on mood, cognition and health. The study provides trajectories of the individuals who acquired COVID-19 during the pandemic.
The study looked at social connections and the impact of COVID-19 in terms of geography, deprivation, both urban and rural, social and community environments. The study looked at participant’s attitudes to, and usage of technology in response to the pandemic exploring changes in mobile, smartphone and social network usage, comparing this with data from previous waves of interviewing. Whether this has changed and if individuals have been able and willing to utilise support available through this root.
• The study is one of the core cohorts of the Dementias Platform UK (DPUK). CFAS data (non- identifiable) is available to researchers through the DPUK data application processes. Though the mortality data supplied by NHS Digital is not made available, it is used to calculate binary mortality outcomes (i.e. living or deceased) which are made available through the DPUK.
Expected measurable benefits
Findings on dementia prevalence and incidence are extremely beneficial to the NHS. Services are planned based on estimates of prevalence and incidence but the CFAS study is providing evidence that reductions in numbers are possible through proactive interventions. Such information encourages such interventions and helps care providers to more accurately plan services ensuring patients’ needs are catered for while reducing risk of wasting resources.
The benefits are achieved through use of the full data the CFAS studies collect from various sources. Mortality data comprises a small but important proportion of that data making it possible to ascertain the survival of individuals based on different conditions which can then be used in population modelling and public health outcomes. Specifically for example, the date of death will enable estimates of life expectancy for those who develop cognitive impairment between different waves of interviewing. Information is also required in relation to those leaving the NHS through emigration etc. in order to allow more accurate estimates of survival rates.
The CFAS II conducted a dementia risk reduction (intervention) pilot study in three study centres, funded by the Alzheimer’s Research UK (ARUK). The study results will be published shortly regarding the feasibility, acceptability and adherence to the intervention. This data will be beneficial for proposed future intervention studies, ensuring that the interventions are targeted appropriately, with adequate resources allocated.
ARUK also supported telephone interviews with CFAS II participants at three centres of the UK, to identify the impact of government imposed Social Isolation measures on older people during the COVID pandemic. A follow up interview funded by UKRI/ESRC took place during the second lockdown period.
Information collected during the telephone interviews included the increased need of technology in order to access services during the pandemic. Reaction to the requirement by GP surgeries to conduct mainly remote consultations and what impact this had on the older generation. The results will be published in the coming months which will feed into future policy development.
CFAS Wales:
Having contributed to the development of the Welsh Government’s Dementia Action Plan 2018-2022, through membership of the Dementia Oversight of Implementation and Impact group the CFAS Wales team is able to participate in policy development, making use of outputs from the study using longitudinal data, which are now being published.
Service planning will benefit from more accurate estimates of morbidity and disability, and will allow resources to be targeted where they can be most effective.
Further follow-on studies funded by Health & Care Research Wales and (as part of the IDEAL-2 study) the Alzheimer’s Society have enabled additional follow-up qualitative data to be collected, addressing issues of social exclusion and unidentified dementia in the community, which will feed into further policy development.
Benefits reported so far
• CFAS contributed to a Dunhill trust funded policy document entitled: Making the extra year’s count: Inequalities in disability and dependency with increasing longevity; published in 2021 by the International longevity Centre UK. The report used longitudinal data from CFAS I and CFAS II. The report adds weight to the role of prevention in addressing inequality.
• The CADDY study have published their findings, the study was conducted in collaboration with CFAS II, the aim to describe the population meeting the criteria for dementia but without diagnosis; it helped identify predictors of being diagnosed and estimated the effect of diagnosis on mortality, move to residential care, social participation and wellbeing.
• The DECIDE study (CFAS II the Newcastle cohort), looked at the effect of recurrent delirium over 12 months on participants.
• The findings on lower prevalence rates of dementia identified in the CFAS studies are now being used by Welsh Government to establish the expected prevalence of dementia, in calculating the diagnosis rates across Health Boards in Wales. These figures then form the basis for one of the key targets established in the Dementia Action Plan for Wales. This aims to increase the diagnosis rate by 3% per annum from the 2017 baseline of 51%, with the primary care dementia register being used as the indicator that a diagnosis has been made.
• The CFAS findings have been used in Wales, alongside converging findings from other studies, to inform a high profile public health campaign ‘ACT NOW’ launched in 2017, to prompt people to make lifestyle changes in mid-life to reduce the risk of developing dementia later. This campaign has been reinforced in the Welsh Government’s Dementia Action Plan for Wales 2018-2022, launched in February 2018.
• CFAS Wales (through an on-going engagement with the Wales Centre for Ageing & Dementia Research) has worked closely with Ageing Well in Wales, a national programme hosted by the Older People's Commissioner for Wales, ‘bringing together individuals and communities with public, private and voluntary sectors to develop and promote innovative and practical ways to make Wales a good place to grow older for everyone.’ For example, the collaboration with the work stream on the reduction of loneliness and isolation in older people has led to the development of widely available resources, based directly on research undertaken as part of the CFAS Wales project. These include ‘Making a difference’ a pocket guide to reducing loneliness.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| Demographics | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Cohort Event Notification Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Flagging Current Status Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to any of the 32 files released under this agreement, across every version. About opt-outs
No files recorded as released under the latest version. 32 were released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions — earlier versions existed before this site's records begin.
DARS-NIC-147034-XH3H2-v4.3 13 September 2021 to 12 September 2022
- Title
- MRC Cognitive Function and Ageing Study - CFAS II, plusMaintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 0
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report
What changed from DARS-NIC-147034-XH3H2-v3.4
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | MRC Cognitive Function and Ageing Study - CFAS II, plusMaintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales) | |
| Start date | 2021-09-13 | |
| End date | 2022-09-12 | |
| Civil Registrations of Death: legal basis | Health and Social Care Act 2012 – s261(2)(c) | |
| Demographics: legal basis | Health and Social Care Act 2012 – s261(2)(c) | |
| MRIS - Cause of Death Report: legal basis | Health and Social Care Act 2012 – s261(2)(c) | |
| MRIS - Cohort Event Notification Report: legal basis | Health and Social Care Act 2012 – s261(2)(c) | |
| MRIS - Flagging Current Status Report: legal basis | Health and Social Care Act 2012 – s261(2)(c) |
Objective for processing
The University of Cambridge is requesting the date and cause of death data of participants of the Cognitive Function and Ageing Study II (CFAS II) and CFAS Wales, which were integrated under the previous DSA (v1).
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period. This is a pragmatic approach to permit retention of the data whilst enabling the University of Cambridge to complete the necessary actions to enable a subsequent application to extend the Agreement meeting all applicable data sharing standards as published in NHS Digital’s website (see: https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance).
Under previous iterations of this Agreement, the University of Cambridge received the date and cause of death data of participants of the Cognitive Function and Ageing Study II (CFAS II) and CFAS Wales.
[3 paragraphs unchanged]
CFAS II and CFAS Wales were integrated under the previous DSA, v1.
[2 paragraphs unchanged]
Processing activities
[2 paragraphs unchanged]
NHS Digital will continue to provide routine reports of participants’ deaths and/or exits from the NHS for the existing cohort plus the additional participants.
No new data will be provided under this Agreement.
The data
previously
supplied by NHS Digital is held as identifiable data within the Secure Data Hosting Service (SDHS) at the School of Clinical Medicine, University of Cambridge.
Only the core CFAS team
(4 persons)
has access to the identifiable data held on the secure server. All
[47 words unchanged]
transfers are audited. No identifiable data is ever released to collaborating researchers.
[4 paragraphs unchanged]
Expected output
The
CFAS study (which comprises
Cognitive Function and Ageing studies (CFAS) include
the original CFAS study (CFAS I) plus CFAS II and CFAS Wales)
it
has produced over
260
290
peer reviewed papers in high profile
publications including The Lancet, BMJ, New England Journal of Medicine, Age and Ageing and Mental Health.
publications.
All study papers can be accessed via the study website: www.cfas.ac.uk.
[1 paragraph unchanged]
In the past three years the study has led to the publication of
37
an additional 30
academic
papers, further
papers
and there
are
currently a further four papers
in draft, awaiting submission or awaiting acceptance by publications.
CFAS disseminates its findings widely in both the UK and abroad, recent activity includes:
• The Newcastle DELIRIUM study based on hospital admissions of the CFAS Newcastle cohort concluded late 2017 it has produced 6 academic papers, with analysis ongoing and further papers planned.
• Presentations at the Alzheimer’s Society annual conference, May 2018 in London.
• In 2020, CFAS concluded a Dementia risk reduction (Intervention) pilot study funded by Alzheimer’s Research UK (ARUK). CFAS II participants in Cambridgeshire, Newcastle and Nottingham took part to test feasibility, acceptability and adherence of the proposed intervention. The data has been collected, collated and a number of papers are currently with co-authors for review.
• Symposium at the Alzheimer’s Association International Conference (AAIC), July 2018
• During the COVID pandemic CFAS was funded by ARUK to conduct telephone interviews to assess the impact of the social isolation polices, implemented by the government on people over the age of 75 years with multi morbidities. Data collected included mental health and wellbeing, general health, isolation, social care usage and support received from others including family, neighbours, church, local authority, social groups etc.
Chicago.
The COVID-19 response relied heavily on connectedness through the internet, we explored participant’s access to and usage of technology to see to what extent there had been new usage as a result of the crisis and whether urgent need enabled new learning and acceptance of an unfamiliar technology. The data collection is completed, papers are in draft.
* Alzheimer's Disease International, Chicago, July 2018
• UKRI-ESRC funded a second wave of CFAS telephone interviews with the aim of exploring the impacts of multiple lockdowns on this vulnerable group of people. Examining impacts on mood, cognition and health. The study provides trajectories of the individuals who acquired COVID-19 during the pandemic.
* European Congress of Epidemiology Lyon, France, July 2018
The study looked at social connections and the impact of COVID-19 in terms of geography, deprivation, both urban and rural, social and community environments. The study looked at participant’s attitudes to, and usage of technology in response to the pandemic exploring changes in mobile, smartphone and social network usage, comparing this with data from previous waves of interviewing. Whether this has changed and if individuals have been able and willing to utilise support available through this root.
•
The study is one of the core cohorts of the Dementias Platform
[35 words unchanged]
outcomes (i.e. living or deceased) which are made available through the DPUK.
Current CFAS work with the Newcastle DELIRIUM study is helping to prospectively elucidate the size of the effect of delirium upon cognitive decline and incident dementia. The results will be used to inform future dementia prevention trials that focus on delirium intervention. The study is expected to report in autumn 2018.
In the coming three years CFAS will be conducting a Dementia risk reduction (Intervention) pilot study funded by Alzheimer’s Research UK (ARUK) with CFAS II participants in Cambridgeshire, Newcastle and Nottingham to test feasibility, acceptability and adherence of the proposed intervention. The results will be available in 2020.
Expected measurable benefits
The CFAS has been and will continue to be beneficial to health care in the following ways:
[2 paragraphs unchanged]
Dramatic global increases in future numbers of people with dementia have been predicted. No multi-centre population based study powered to detect changes over time had previously reported dementia incidence.
The CFAS II conducted a dementia risk reduction (intervention) pilot study in three study centres, funded by the Alzheimer’s Research UK (ARUK). The study results will be published shortly regarding the feasibility, acceptability and adherence to the intervention. This data will be beneficial for proposed future intervention studies, ensuring that the interventions are targeted appropriately, with adequate resources allocated.
Thirty percent of Alzheimer’s disease cases have been linked to modifiable lifestyle factors. We are currently conducting a feasibility pilot study to ascertain if an internet counselling intervention targeting cardiovascular risk factors is acceptable, feasible or appropriate for people over the age of 75 years. The results will decide whether outcome measures are suitable for launching a full scale trial
ARUK also supported telephone interviews with CFAS II participants at three centres of the UK, to identify the impact of government imposed Social Isolation measures on older people during the COVID pandemic. A follow up interview funded by UKRI/ESRC took place during the second lockdown period.
Dependency:
Information collected during the telephone interviews included the increased need of technology in order to access services during the pandemic. Reaction to the requirement by GP surgeries to conduct mainly remote consultations and what impact this had on the older generation. The results will be published in the coming months which will feed into future policy development.
Little is known about how the proportions of dependency states have changed between generational cohorts of older people. The CFAS study aimed to estimate years lived in different dependency states at age 65 years in 1991 and 2011(4) and provided new projections of future demand for care. These recent findings will have considerable implications for families of older people, who provide the majority of unpaid care, but the findings also provide valuable new information for governments and care providers planning the resources and funding required for the care of their future ageing populations.
CFAS Wales:
CFAS Wales – The initial outputs using longitudinal data are expected to be published in 2018 (initial outputs using cross-sectional data from the wave 1 interviews have been published in 2015)
Having contributed to the development of the Welsh Government’s Dementia Action Plan 2018-2022, through membership of the Dementia Oversight of Implementation and Impact group the CFAS Wales team is able to participate in policy development, making use of outputs from the study using longitudinal data, which are now being published.
In Wales, the approach to targets differs, but policy will be influenced by findings on the concordance of dementia registers and ascertained dementia in the community.
Service planning will benefit from more accurate estimates of morbidity and disability, and will allow resources to be targeted where they can be most effective.
Public Health Wales issues guidance on lifestyle changes to reduce the risk of developing dementia (5). The studies will contribute to revisions of this advice. The study will inform the Welsh government regarding aspects of social exclusion and the relationship between social exclusion and mortality (6,7,8) will be a key part of these findings. Service planning will benefit from more accurate estimates of morbidity and disability, and will allow resources to be targeted where they can be most effective.
Further follow-on studies funded by Health & Care Research Wales and (as part of the IDEAL-2 study) the Alzheimer’s Society have enabled additional follow-up qualitative data to be collected, addressing issues of social exclusion and unidentified dementia in the community, which will feed into further policy development.
Benefits reported
CFAS has over a period of 25+ years provided evidence to Governmental bodies including the House of Lords and David Cameron’s Dementia 2020 campaign. The study has provided pseudonymised data to local authorities – Cambridgeshire and Peterborough clinical commissioning group used CFAS data to look at Long Term Conditions across the life course for their Joint Strategic Needs Assessment (JSNA) in 2015.
• CFAS contributed to a Dunhill trust funded policy document entitled: Making the extra year’s count: Inequalities in disability and dependency with increasing longevity; published in 2021 by the International longevity Centre UK. The report used longitudinal data from CFAS I and CFAS II. The report adds weight to the role of prevention in addressing inequality.
The Alzheimer’s Society used CFAS data for their Dementia UK reports and the University of Cambridge’s paper on Anticholinergic Medication use and Cognitive impairment in the older population raised awareness that use of medications with anticholinergic activity increases the cumulative risk of cognitive impairment and mortality.
• The CADDY study have published their findings, the study was conducted in collaboration with CFAS II, the aim to describe the population meeting the criteria for dementia but without diagnosis; it helped identify predictors of being diagnosed and estimated the effect of diagnosis on mortality, move to residential care, social participation and wellbeing.
Dementia Prevalence
• The DECIDE study (CFAS II the Newcastle cohort), looked at the effect of recurrent delirium over 12 months on participants.
7,635 people aged 65 years or older where interviewed in CFAS I in Cambridgeshire, Newcastle and Nottingham with 1,457 being diagnostically assessed. In the same geographic areas CFAS II interviewed 7796 individuals. Using CFAS I, age and sex specific estimates of prevalence in people over 65 years, standardised to the 2011 population, 8.3% (884,000) of this population would be expected to have dementia in 2011. However CFAS II showed the prevalence (1) was lower (6.5%; 670,000), a decrease of 1.8%. This paper received a Royal College of General Practitioners (RCGP) paper of the year award in 2013.
• The findings on lower prevalence rates of dementia identified in the CFAS studies are now being used by Welsh Government to establish the expected prevalence of dementia, in calculating the diagnosis rates across Health Boards in Wales. These figures then form the basis for one of the key targets established in the Dementia Action Plan for Wales. This aims to increase the diagnosis rate by 3% per annum from the 2017 baseline of 51%, with the primary care dementia register being used as the indicator that a diagnosis has been made.
Dementia Incidence
• The CFAS findings have been used in Wales, alongside converging findings from other studies, to inform a high profile public health campaign ‘ACT NOW’ launched in 2017, to prompt people to make lifestyle changes in mid-life to reduce the risk of developing dementia later. This campaign has been reinforced in the Welsh Government’s Dementia Action Plan for Wales 2018-2022, launched in February 2018.
Two years after completion of the baseline interviews, CFAS I re-interviewed 5,156 people (76% response) and CFAS II re-interviewed 5,288 (74% response). The study reported a 20% drop in incidence (2) (95% CI: 0-40%), driven by a reduction in dementia in men across all ages above 65 years.
• CFAS Wales (through an on-going engagement with the Wales Centre for Ageing & Dementia Research) has worked closely with Ageing Well in Wales, a national programme hosted by the Older People's Commissioner for Wales, ‘bringing together individuals and communities with public, private and voluntary sectors to develop and promote innovative and practical ways to make Wales a good place to grow older for everyone.’ For example, the collaboration with the work stream on the reduction of loneliness and isolation in older people has led to the development of widely available resources, based directly on research undertaken as part of the CFAS Wales project. These include ‘Making a difference’ a pocket guide to reducing loneliness.
CFAS has supported NHS England (at their request) using the dementia prevalence and incidence data to allow more accurate estimates of dementia at a CCG level.
CFAS II was a major contributor to a project modelling projections of multi-morbidity in the older population in England to 2035: Estimates from the Population Ageing and Care Simulation (PACSim) model.
Age specific mortality reduction has been accompanied by a decrease in the prevalence of some diseases and increase in others. CFAS has provided evidence that the relationship between frailty and mortality did not significantly differ across CFAS I and CFAS II. Severe frailty as an indicator or mortality is shown to be a stable construct.
Reference to the research
1. A two-decade comparison of prevalence of dementia in individuals aged 65 and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet 2013;382:1405-12
2. A two decade dementia incidence comparison from the Cognitive Function and Ageing studies I & II. NATURE COMMUNICATIONS | 7:11398 | DOI: 10.1038/ncomms11398
3. Wu, Y.T., Fratiglioni L., Matthews, F.E., Lobo, A., Breteler, M.M., Skoog, I., & Brayne, C (2016) Dementia in western Europe: epidemiological evidence and implications for policy making. The Lancet Neurology, 15(1), 116-124.
4. Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS). Kingston A, Wohland P, Wittenberg R, Robinson L, Brayne C, Matthews FE, Jagger C. 2017, The LancetAugust 15, 2017 http://dx.doi.org/10.1016/ S0140-6736(17)31575-1
5.Clare, L., Wu, Y.T., Teale, J.C., MacLeod, C., Matthews, F., Brayne, C. & Woods, B. on behalf of the CFAS-Wales study team. (2017). Potentially-modifiable Lifestyle Factors, Cognitive Reserve and Cognitive Function in Later Life: a Cross-sectional Study. PLOS Medicine. http://dx.doi.org/10.1371/journal.pmed.1002259
6. Yates, J.A., Clare, L., Woods, R.T., & Cognitive Function and Ageing Study Wales (2017) What is the Relationship between Health, Mood, and Mild Cognitive Impairment? Journal of Alzheimer's disease, 55(3), 1183-1193.
7. Burholt, V., Windle, G., & Morgan, D. J. (2016). A Social Model of Loneliness: The Roles of Disability, Social Resources, and Cognitive Impairment. The Gerontologist, gnw125.
8. Yates, J. A., Clare, L., & Woods, R. T. (2017). “You’ve got a friend in me”: can social networks mediate the relationship between mood and Mild Cognitive Impairment?. BMC Geriatrics, 17(1), 144.
9. Andrew Kingston, Louise Robinson, Heather Booth, Martin Knapp, Carol Jagger for the MODEM Project. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afx201.
10. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Is frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afy077.
DARS-NIC-147034-XH3H2-v3.4 21 May 2020 to 25 August 2021
- Title
- MR1280: MRC Cognitive Function and Ageing Study - CFAS II, plus Maintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 8
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report
What changed from DARS-NIC-147034-XH3H2-v2.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-05-21 |
Datasets: + Civil Registrations of Death; + Demographics
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
The University of Cambridge is requesting the date and cause of death data of participants of the Cognitive Function and Ageing Study II (CFAS II) and CFAS Wales, which were integrated under the previous DSA (v1).
CFAS II and CFAS Wales are longitudinal population based epidemiological studies of people over the age of 65 years. These studies were built on the design of the original CFAS study which began in 1989 and was based in six centres in the UK: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd. The study recruited over 18,000 people and conducted in excess of 48,000 interviews over a period of more than 25 years which has provided sound evidence generated by high quality population based research to advance understanding of health and health changes with age. The study links fields from policy through to molecular epidemiology.
CFAS II is a new generational cohort of people aged 65 years and older who were recruited between 2008 - 2011 at three of the original CFAS study centres - Cambridge, Newcastle and Nottingham. The study recruited 7500 people and conducted a baseline and two year follow up interview. The study was funded by the Medical Research Council (MRC). The study has provided important information on people aged 65-84 in 2007-2008 who will reach the age of greatest frailty during the 2020’s. The information gathered will increase knowledge on the onset, course and risk factors for dementia and related conditions as well as healthy and frail ageing.
CFAS Wales, funded by the Economic and Social Research Council (ESRC) includes the original CFAS centre of Gwynedd but also an additional centre in Swansea. Over 5,000 people were recruited to the study. A baseline (2011-2014) and two year follow up interview were conducted.
CFAS II and CFAS Wales were integrated under the previous DSA, v1.
Data collected included: Demographics, lifestyle variables, health status, functional limitations, cognitive function, depression, dementia and anxiety, hearing and visual impairment. The CFAS Wales data adds to CFAS II in terms of sample size, but also includes a number of additional social science variables such as resilience, self-efficacy, social support, social capital, care needs and social networks including receipt of formal care, which will assist in extending and understanding the results obtained.
The study utilises date and cause of death of participants supplied by NHS Digital. The requirement of exact dates of death is important to ascertain the survival of individuals based on different conditions which can then be used in population modelling and public health outcomes. Specifically for example, the date of death will enable estimates of life expectancy for those who develop cognitive impairment between different waves of interviewing. Information is also required in relation to those leaving the NHS through emigration etc. in order to allow more accurate estimates of survival rates.
Expected output
The CFAS study (which comprises the original CFAS study (CFAS I) plus CFAS II and CFAS Wales) has produced over 260 peer reviewed papers in high profile publications including The Lancet, BMJ, New England Journal of Medicine, Age and Ageing and Mental Health. All study papers can be accessed via the study website: www.cfas.ac.uk.
The study covers multiple areas including: population projections of risk, mortality, dementia prevalence and incidence, policy, healthy active life expectancy, social implications, pharmacology, mild cognitive impairment (MCI) and neuropathology.
In the past three years the study has led to the publication of 37 academic papers and there are currently a further four papers in draft, awaiting submission or awaiting acceptance by publications.
CFAS disseminates its findings widely in both the UK and abroad, recent activity includes:
• Presentations at the Alzheimer’s Society annual conference, May 2018 in London.
• Symposium at the Alzheimer’s Association International Conference (AAIC), July 2018
Chicago.
* Alzheimer's Disease International, Chicago, July 2018
* European Congress of Epidemiology Lyon, France, July 2018
The study is one of the core cohorts of the Dementias Platform UK (DPUK). CFAS data (non- identifiable) is available to researchers through the DPUK data application processes. Though the mortality data supplied by NHS Digital is not made available, it is used to calculate binary mortality outcomes (i.e. living or deceased) which are made available through the DPUK.
Current CFAS work with the Newcastle DELIRIUM study is helping to prospectively elucidate the size of the effect of delirium upon cognitive decline and incident dementia. The results will be used to inform future dementia prevention trials that focus on delirium intervention. The study is expected to report in autumn 2018.
In the coming three years CFAS will be conducting a Dementia risk reduction (Intervention) pilot study funded by Alzheimer’s Research UK (ARUK) with CFAS II participants in Cambridgeshire, Newcastle and Nottingham to test feasibility, acceptability and adherence of the proposed intervention. The results will be available in 2020.
Benefits reported
CFAS has over a period of 25+ years provided evidence to Governmental bodies including the House of Lords and David Cameron’s Dementia 2020 campaign. The study has provided pseudonymised data to local authorities – Cambridgeshire and Peterborough clinical commissioning group used CFAS data to look at Long Term Conditions across the life course for their Joint Strategic Needs Assessment (JSNA) in 2015.
The Alzheimer’s Society used CFAS data for their Dementia UK reports and the University of Cambridge’s paper on Anticholinergic Medication use and Cognitive impairment in the older population raised awareness that use of medications with anticholinergic activity increases the cumulative risk of cognitive impairment and mortality.
Dementia Prevalence
7,635 people aged 65 years or older where interviewed in CFAS I in Cambridgeshire, Newcastle and Nottingham with 1,457 being diagnostically assessed. In the same geographic areas CFAS II interviewed 7796 individuals. Using CFAS I, age and sex specific estimates of prevalence in people over 65 years, standardised to the 2011 population, 8.3% (884,000) of this population would be expected to have dementia in 2011. However CFAS II showed the prevalence (1) was lower (6.5%; 670,000), a decrease of 1.8%. This paper received a Royal College of General Practitioners (RCGP) paper of the year award in 2013.
Dementia Incidence
Two years after completion of the baseline interviews, CFAS I re-interviewed 5,156 people (76% response) and CFAS II re-interviewed 5,288 (74% response). The study reported a 20% drop in incidence (2) (95% CI: 0-40%), driven by a reduction in dementia in men across all ages above 65 years.
CFAS has supported NHS England (at their request) using the dementia prevalence and incidence data to allow more accurate estimates of dementia at a CCG level.
CFAS II was a major contributor to a project modelling projections of multi-morbidity in the older population in England to 2035: Estimates from the Population Ageing and Care Simulation (PACSim) model.
Age specific mortality reduction has been accompanied by a decrease in the prevalence of some diseases and increase in others. CFAS has provided evidence that the relationship between frailty and mortality did not significantly differ across CFAS I and CFAS II. Severe frailty as an indicator or mortality is shown to be a stable construct.
Reference to the research
1. A two-decade comparison of prevalence of dementia in individuals aged 65 and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet 2013;382:1405-12
2. A two decade dementia incidence comparison from the Cognitive Function and Ageing studies I & II. NATURE COMMUNICATIONS | 7:11398 | DOI: 10.1038/ncomms11398
3. Wu, Y.T., Fratiglioni L., Matthews, F.E., Lobo, A., Breteler, M.M., Skoog, I., & Brayne, C (2016) Dementia in western Europe: epidemiological evidence and implications for policy making. The Lancet Neurology, 15(1), 116-124.
4. Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS). Kingston A, Wohland P, Wittenberg R, Robinson L, Brayne C, Matthews FE, Jagger C. 2017, The LancetAugust 15, 2017 http://dx.doi.org/10.1016/ S0140-6736(17)31575-1
5.Clare, L., Wu, Y.T., Teale, J.C., MacLeod, C., Matthews, F., Brayne, C. & Woods, B. on behalf of the CFAS-Wales study team. (2017). Potentially-modifiable Lifestyle Factors, Cognitive Reserve and Cognitive Function in Later Life: a Cross-sectional Study. PLOS Medicine. http://dx.doi.org/10.1371/journal.pmed.1002259
6. Yates, J.A., Clare, L., Woods, R.T., & Cognitive Function and Ageing Study Wales (2017) What is the Relationship between Health, Mood, and Mild Cognitive Impairment? Journal of Alzheimer's disease, 55(3), 1183-1193.
7. Burholt, V., Windle, G., & Morgan, D. J. (2016). A Social Model of Loneliness: The Roles of Disability, Social Resources, and Cognitive Impairment. The Gerontologist, gnw125.
8. Yates, J. A., Clare, L., & Woods, R. T. (2017). “You’ve got a friend in me”: can social networks mediate the relationship between mood and Mild Cognitive Impairment?. BMC Geriatrics, 17(1), 144.
9. Andrew Kingston, Louise Robinson, Heather Booth, Martin Knapp, Carol Jagger for the MODEM Project. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afx201.
10. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Is frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afy077.
DARS-NIC-147034-XH3H2-v2.2 24 August 2018 to 25 August 2021
- Title
- MR1280: MRC Cognitive Function and Ageing Study - CFAS II, plus Maintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 24
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report
Objective for processing
The University of Cambridge is requesting the date and cause of death data of participants of the Cognitive Function and Ageing Study II (CFAS II) and CFAS Wales, which were integrated under the previous DSA (v1).
CFAS II and CFAS Wales are longitudinal population based epidemiological studies of people over the age of 65 years. These studies were built on the design of the original CFAS study which began in 1989 and was based in six centres in the UK: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd. The study recruited over 18,000 people and conducted in excess of 48,000 interviews over a period of more than 25 years which has provided sound evidence generated by high quality population based research to advance understanding of health and health changes with age. The study links fields from policy through to molecular epidemiology.
CFAS II is a new generational cohort of people aged 65 years and older who were recruited between 2008 - 2011 at three of the original CFAS study centres - Cambridge, Newcastle and Nottingham. The study recruited 7500 people and conducted a baseline and two year follow up interview. The study was funded by the Medical Research Council (MRC). The study has provided important information on people aged 65-84 in 2007-2008 who will reach the age of greatest frailty during the 2020’s. The information gathered will increase knowledge on the onset, course and risk factors for dementia and related conditions as well as healthy and frail ageing.
CFAS Wales, funded by the Economic and Social Research Council (ESRC) includes the original CFAS centre of Gwynedd but also an additional centre in Swansea. Over 5,000 people were recruited to the study. A baseline (2011-2014) and two year follow up interview were conducted.
CFAS II and CFAS Wales were integrated under the previous DSA, v1.
Data collected included: Demographics, lifestyle variables, health status, functional limitations, cognitive function, depression, dementia and anxiety, hearing and visual impairment. The CFAS Wales data adds to CFAS II in terms of sample size, but also includes a number of additional social science variables such as resilience, self-efficacy, social support, social capital, care needs and social networks including receipt of formal care, which will assist in extending and understanding the results obtained.
The study utilises date and cause of death of participants supplied by NHS Digital. The requirement of exact dates of death is important to ascertain the survival of individuals based on different conditions which can then be used in population modelling and public health outcomes. Specifically for example, the date of death will enable estimates of life expectancy for those who develop cognitive impairment between different waves of interviewing. Information is also required in relation to those leaving the NHS through emigration etc. in order to allow more accurate estimates of survival rates.
Expected output
The CFAS study (which comprises the original CFAS study (CFAS I) plus CFAS II and CFAS Wales) has produced over 260 peer reviewed papers in high profile publications including The Lancet, BMJ, New England Journal of Medicine, Age and Ageing and Mental Health. All study papers can be accessed via the study website: www.cfas.ac.uk.
The study covers multiple areas including: population projections of risk, mortality, dementia prevalence and incidence, policy, healthy active life expectancy, social implications, pharmacology, mild cognitive impairment (MCI) and neuropathology.
In the past three years the study has led to the publication of 37 academic papers and there are currently a further four papers in draft, awaiting submission or awaiting acceptance by publications.
CFAS disseminates its findings widely in both the UK and abroad, recent activity includes:
• Presentations at the Alzheimer’s Society annual conference, May 2018 in London.
• Symposium at the Alzheimer’s Association International Conference (AAIC), July 2018
Chicago.
* Alzheimer's Disease International, Chicago, July 2018
* European Congress of Epidemiology Lyon, France, July 2018
The study is one of the core cohorts of the Dementias Platform UK (DPUK). CFAS data (non- identifiable) is available to researchers through the DPUK data application processes. Though the mortality data supplied by NHS Digital is not made available, it is used to calculate binary mortality outcomes (i.e. living or deceased) which are made available through the DPUK.
Current CFAS work with the Newcastle DELIRIUM study is helping to prospectively elucidate the size of the effect of delirium upon cognitive decline and incident dementia. The results will be used to inform future dementia prevention trials that focus on delirium intervention. The study is expected to report in autumn 2018.
In the coming three years CFAS will be conducting a Dementia risk reduction (Intervention) pilot study funded by Alzheimer’s Research UK (ARUK) with CFAS II participants in Cambridgeshire, Newcastle and Nottingham to test feasibility, acceptability and adherence of the proposed intervention. The results will be available in 2020.
Benefits reported
CFAS has over a period of 25+ years provided evidence to Governmental bodies including the House of Lords and David Cameron’s Dementia 2020 campaign. The study has provided pseudonymised data to local authorities – Cambridgeshire and Peterborough clinical commissioning group used CFAS data to look at Long Term Conditions across the life course for their Joint Strategic Needs Assessment (JSNA) in 2015.
The Alzheimer’s Society used CFAS data for their Dementia UK reports and the University of Cambridge’s paper on Anticholinergic Medication use and Cognitive impairment in the older population raised awareness that use of medications with anticholinergic activity increases the cumulative risk of cognitive impairment and mortality.
Dementia Prevalence
7,635 people aged 65 years or older where interviewed in CFAS I in Cambridgeshire, Newcastle and Nottingham with 1,457 being diagnostically assessed. In the same geographic areas CFAS II interviewed 7796 individuals. Using CFAS I, age and sex specific estimates of prevalence in people over 65 years, standardised to the 2011 population, 8.3% (884,000) of this population would be expected to have dementia in 2011. However CFAS II showed the prevalence (1) was lower (6.5%; 670,000), a decrease of 1.8%. This paper received a Royal College of General Practitioners (RCGP) paper of the year award in 2013.
Dementia Incidence
Two years after completion of the baseline interviews, CFAS I re-interviewed 5,156 people (76% response) and CFAS II re-interviewed 5,288 (74% response). The study reported a 20% drop in incidence (2) (95% CI: 0-40%), driven by a reduction in dementia in men across all ages above 65 years.
CFAS has supported NHS England (at their request) using the dementia prevalence and incidence data to allow more accurate estimates of dementia at a CCG level.
CFAS II was a major contributor to a project modelling projections of multi-morbidity in the older population in England to 2035: Estimates from the Population Ageing and Care Simulation (PACSim) model.
Age specific mortality reduction has been accompanied by a decrease in the prevalence of some diseases and increase in others. CFAS has provided evidence that the relationship between frailty and mortality did not significantly differ across CFAS I and CFAS II. Severe frailty as an indicator or mortality is shown to be a stable construct.
Reference to the research
1. A two-decade comparison of prevalence of dementia in individuals aged 65 and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet 2013;382:1405-12
2. A two decade dementia incidence comparison from the Cognitive Function and Ageing studies I & II. NATURE COMMUNICATIONS | 7:11398 | DOI: 10.1038/ncomms11398
3. Wu, Y.T., Fratiglioni L., Matthews, F.E., Lobo, A., Breteler, M.M., Skoog, I., & Brayne, C (2016) Dementia in western Europe: epidemiological evidence and implications for policy making. The Lancet Neurology, 15(1), 116-124.
4. Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS). Kingston A, Wohland P, Wittenberg R, Robinson L, Brayne C, Matthews FE, Jagger C. 2017, The LancetAugust 15, 2017 http://dx.doi.org/10.1016/ S0140-6736(17)31575-1
5.Clare, L., Wu, Y.T., Teale, J.C., MacLeod, C., Matthews, F., Brayne, C. & Woods, B. on behalf of the CFAS-Wales study team. (2017). Potentially-modifiable Lifestyle Factors, Cognitive Reserve and Cognitive Function in Later Life: a Cross-sectional Study. PLOS Medicine. http://dx.doi.org/10.1371/journal.pmed.1002259
6. Yates, J.A., Clare, L., Woods, R.T., & Cognitive Function and Ageing Study Wales (2017) What is the Relationship between Health, Mood, and Mild Cognitive Impairment? Journal of Alzheimer's disease, 55(3), 1183-1193.
7. Burholt, V., Windle, G., & Morgan, D. J. (2016). A Social Model of Loneliness: The Roles of Disability, Social Resources, and Cognitive Impairment. The Gerontologist, gnw125.
8. Yates, J. A., Clare, L., & Woods, R. T. (2017). “You’ve got a friend in me”: can social networks mediate the relationship between mood and Mild Cognitive Impairment?. BMC Geriatrics, 17(1), 144.
9. Andrew Kingston, Louise Robinson, Heather Booth, Martin Knapp, Carol Jagger for the MODEM Project. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afx201.
10. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Is frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Age and Ageing 2018; 0:1-7 doi: 10.1093/ageing/afy077.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
-
July 2021 —
already listed in the earliest edition this site holds, so it may be older. 2 versions: DARS-NIC-147034-XH3H2-v2.2, DARS-NIC-147034-XH3H2-v3.4
-
October 2021
1 version added: DARS-NIC-147034-XH3H2-v4.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-147034-XH3H2, “MRC Cognitive Function and Ageing Study - CFAS II, plusMaintaining function and wellbeing in later life: a Longitudinal cohort study (CFAS Wales)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-147034-xh3h2/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-147034-XH3H2 to see the original rows.