MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)
University of Cambridge · Academic
Expired The latest version ended on 13 December 2022. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-147829-5K4QP
- Latest version
- v4.3
- Term of latest version
- 14 December 2021 to 13 December 2022
- Start date
- Before 14 December 2018
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 26
Why the data was released
Objective for processing
In the early 1980’s the University of Liverpool was funded by the Medical Research Council (MRC) to conduct a longitudinal study of the incidence of mental disorder in older people using the Geriatric Mental State Exam (GMS) this study was known as the Liverpool Study of Continuing Health in the Community. In 1989 a follow up study funded by the MRC began - the Ageing in Liverpool Health Aspects (ALPHA) study. The ALPHA study (MR490) comprising an urban sample of 6000 people aged 65+ from the city of Liverpool based on postal districts L1-L19, L24, L25-27.
In 1989 the MRC funded the Cognitive Function and Ageing Study (MR480) this study was based in Cambridge, Newcastle, Nottingham, Oxford and Gwynedd – baseline 1991-1993.
The population was selected from all those aged 65 years and over on the index date, living within a specified geographic location. Background information on the demographics of the populations sampled was collected from the Office of Population Census and Surveys (OPCS), 1990-91 Office of National Statistics, (ONS) to relate to regional and national data.
It was essential that the population lists used for sampling were as accurate as possible. Accurate prevalence rates could only be achieved if those who were confined to institutions (residential, care, nursing homes and long stay hospitals, were included in the sampling frame. Family Health Service Authority (FHSA) lists were used as the sampling frame. Each centre defined a precise geographic area, and the study population was drawn from all those who were resident within it. Problems of inaccuracy, patients who died or moved away but were still on the FHSA list, were resolved by asking GP surgeries to check the lists. In the event of a GP being unable to update the sampling list, the original list was used. Full details of the study background and sampling process can be found at: www.cfas.ac.uk.
MRC CFAS identified 2500 individuals aged 65 years and over, stratified by age and sex, (equal numbers aged 65-74 and 75>) within specific geographic locations in: Cambridgeshire, Newcastle, Nottingham, Oxford and Gwynedd.
All participants who consented to take part in the study, signed a consent form allowing the study access to their GP and other medical records. As was common practice at the time, medical research studies were flagged at ONS for date and cause of death. For the remaining un-consented sample, section 251 approval was granted to allow the study to receive - date and cause of death.
This Agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage.
The ALPHA study was incorporated into the MRC CFAS study in 1991. The two studies have been receiving death notifications since the mid 1990’s from ONS. 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.
New generational cohorts have been established CFAS II and CFAS Wales (MR1280) which recruited people over the age of 65 from the same geographical areas, between 2008- 2013. The integration of these new cohorts provides the opportunity to address government policy of whether gains in active life expectancy have occurred between generations.
The ALPHA Study and MRC CFAS studies have run in tandem since 1991 with all identifiable data kept at the MRC Biostatistics Unit at Cambridge until 2017, at which point all data transferred to the Secure Data Hosting Service (SDHS) at the University of Cambridge in 2017 (for which the study received CAG approval 14/CAG/1025 – Amendment 1). Whilst other organisations were involved in these studies when they were live (i.e, 1989/91-2011), this involvement has now ceased. There are no other organisations involved in any of the decisions relating to the ongoing processing of data. Only the University of Cambridge determines the manner of data processing, and is, therefore, the sole data controller who also processes data for both ALPHA and MRC CFAS.
The purpose of this application is a request to bring together the two cohorts that are currently flagged separately by NHS Digital:
1) MR490 which represents The Ageing in Liverpool Health Aspects (ALPHA) Study cohort.
2) MR480 which represents The MRC Cognitive Function and Ageing Study (CFAS) cohort
There are subsequent studies under the Cognitive Function and Aging Study (CFAS) umbrella, specifically CFAS II and CFAS Wales, but these do not relate to this agreement.
Both cohorts fall under the wider MRC Cognitive Function and Ageing Study (MRC CFAS). The Office for National Statistics (ONS) requested the two cohorts be initially flagged separately but NHS digital suggested to the University of Cambridge in 2017 that for administrative ease the two cohorts should be brought together into one application as they are for the same use in the same study and both rely on the same S251 support.
The studies are longitudinal population based epidemiological studies based in six areas of the UK including: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd.
The Ageing in Liverpool Health Aspects (ALPHA) study, based in Liverpool was the first to recruit participants between 1989-1991, it had a slightly different initial study design to MRC CFAS but many aspects of its design and methodology enabled it to be integrated into the larger MRC Cognitive Function and Ageing Study (the other five centres (baseline 1991-1993)). The two studies have been run in tandem for over 25 years.
The two studies have together 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 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.
The purpose of the two studies:
1. To estimate the prevalence and incidence of cognitive decline and dementia and the range of variation of those two measures throughout England and Wales
2. To determine the natural history of dementia, in particular the rate of progression of cognitive decline including the distribution of the interval between the identification of cognitive impairment and death.
3. To evaluate the degree of disability associated with cognitive decline and the service needs this disability generates.
Subsidiary aims were:
1. To form the basis for longer term studies of trends over time and by birth cohort of the prevalence and incidence of cognitive decline.
2. To determine the contribution of different underlying pathologies to the rates of dementia and the geographic variation in these rates and to the burden of disability.
3. To identify factors associated with differing rates of cognitive decline and with the risk of dementia.
4. To act as a core resource and provide a framework to support specific sub-studies in each Centre (ALPHA and MRC CFAS) e.g.
a) The Resource implication study: - which investigated the resource implications to families and health and personal service providers for older people with mental and physical frailty, conducted in Cambridge, Newcastle, Nottingham and Oxford.
b) The Network Study: – described the nature and distribution of support networks of older people, conducted at Bangor University (Gwynedd)
c) The Healthy Ageing Study: – which examined the relationship between sociological, psychological and biological variables in a representative sample of the older population. Conducted in Cambridge and Nottingham.
d) Neuropathology and Neurology: – the aim to diagnose different types of dementia and interactions between classical cellular and molecular neuropathological structures through examination of the donated brain tissue – all centres.
e) Genetic Study: – bloods were taken and stored for analysis from a subgroup, part of the sample had DNA extracted and genetic analyses conducted – all centres.
The GDPR legal basis for processing the data held under this Agreement is Article 6(1)(e) (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j) (processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.
Processing activities
This agreement covers the release of data for the main study cohort under section 251, and for a sub-cohort of 47 participants who have given informed consent for data linkage to take place.
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, brain tissue etc.).
The University of Cambridge has previously supplied lists of identifiers for CFAS (MR480) and ALPHA (MR490) participants to NHS Digital separately. Data provided to NHS Digital have consisted of name, date of birth, NHS number, postcode and a unique study identifier for each participant. NHS Digital have linked that data and routinely provided reports containing details of participants’ deaths (date and cause of death) to the University of Cambridge. As the cohort is already flagged by NHS Digital, no new data will flow into NHS Digital under this agreement.
The data 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 employees) 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. The University sends record-level linked data with a study ID to collaborating researchers, but do not send identifiable data to them. This is not NHS Digital data, however, but it is derived from NHS Digital data. The information of whether people are dead or not is provided to these researchers based on the pseudonymised linked ID that is used throughout the entire study for sharing individual’s information to agreed researchers. This data relates both to the deceased and the living. There will be no attempt to re-identify by recipients of the derived data.
No NHS Digital data 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 the HES Analysis Guide.
Proposed Data Flows Going Forward
A. University of Cambridge securely transferred a file of identifiers (NHS number, date of birth, and postcode plus unique study ID to NHS Digital for both ALPHA and MRC CFAS. These studies will be brought together by NHS Digital/MRIS team.
B. NHS Digital will reflag the ALPHA study (MR490 cohort) before adding this cohort to the CFAS study (MR480 cohort)
C. NHS Digital will then disseminate the same data that was disseminated for the two studies under the previous DSAs (NHS number, member ID, supplied identifiers, latest identifiers, fact of death, cause of death and date of death) to University of Cambridge.
- Quarterly dissemination of data are being requested in June, Sep, Dec, March
D. University of Cambridge will store, as it has previously, the data on a server in the secure data hosting service (SDHS) held at the Clinical School, University of Cambridge, which can only be accessed by the approved CFAS core team.
E. The death data received from NHS Digital will be securely stored in a separate location to the participant identifiers
F. University of Cambridge will extract subsets of the mortality data provided by NHS Digital and will convert it into binary indicators (i.e. deceased; not deceased) and those derivations are made more widely available along with other interview data, e.g. depression, anxiety, sleep, loneliness, cognition, health risk factors such as stroke, heart attack, transient ischaemic attacks (TIA's), diabetes, smoking, alcohol use, etc. which are collected during participant interviews by all CFAS studies - (www.cfas.ac.uk). The subsets are made available to other researchers for projects which have been approved by the CFAS management committee (CMC) and for those applications requiring a combination of tissue and data following approval from both the CMC and the CFAS Biological Resource Advisory Committee (BRAC). This is not NHS Digital data, but it is derived from NHS Digital data. Individuals who have taken part in the study (with consent) have agreed that their data is shared widely as is research council funding best practice. The information of whether people are dead or not is provided to these researchers based on the pseudoymised linked ID that is used throughout the entire study for sharing individual’s information to agreed researchers. This data relates both to the deceased and the living. There will be no attempt to re-identify by recipients of the derived data.
The data from NHS Digital has been and 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 extensive variables (as above) collected on the CFAS and ALPHA cohorts from the study questionnaires and analyses of that data may be compared with equivalent analyses from CFAS II and CFAS Wales to assess changes in prevalence and incidence within the same geographical areas or variations across different areas.
All outputs are aggregated with small numbers suppressed in line with the HES Analysis Guide.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).
Expected output
The CFAS studies (MRC CFAS, ALPHA, CFAS II and CFAS Wales) has published over 250 papers in high profile publications including the Lancet, BMJ, New England Journal of Medicine, Age and Ageing etc. All papers are available from our study website: www.cfas.ac.uk.
The CFAS study have, in conjunction with the CFAS II study (2008-Present), produced generational differences in dementia prevalence and incidence. The studies dementia diagnosis rates are currently used by NHS England.
Expected outputs:
Paper: Changing prevalence and treatment of depression among the over 65s over two decades: findings from the Cognitive Function and Ageing Study – British Journal of Psychiatry – in press.
Paper: Iba-1-/CD68+ microglia are a prominent feature of age-associated deep subcortical white matter lesions" PLOS ONE – in press
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 December 2018.
The CFAS study continues to provide study data to other researchers following approval from the CFAS management committee:
In the past year (2018) the study team have received 11 requests for anonymised study data including the following (this data is not NHS Digital data, but is derived from NHS Digital data):
Data only:
Exploring the role of survival bias in gender differences in cognitive decline, University of Cambridge 01/07/2018 – 31/12/2018
The influence of anti-depressants in older people with depression, Newcastle University 1/11/2018 – 31/03/2019
Identifying delirium in people in Parkinson’s disease (DETERMINE-PD) Newcastle University 1/12/18 – 1/12/19
Data/Brain tissue:
Dysregulation of nitric oxide synthases (NOS) expression in the ageing brain. 01/10/2018 – 31/08/2019
Defining the effects of Type 2 Diabetes on the Brain, University of Sheffield June 2019 – June 2020
It is expected that all of the above research will result in papers within nine months of the project completion dates.
In the past four years the study has led to the publication of 30 academic papers and there are currently papers on the following: Risk/frailty, projection of care costs, regional differences of life expectancy, Social isolation, education, mild cognitive impairment (MCI) and Neuropathology which are in draft, awaiting submission or awaiting acceptance by publications and expected in the next 4 months – 1 year.
All outputs and publications contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide.
Expected measurable benefits
The CFAS has been and will continue to be beneficial to health care in the following ways:
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 e.g. MRC CFAS, ALPHA, CFAS II and CFAS Wales. 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 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. The DPUK data portal brings together over 30 UK cohorts with records of over 2 million people in a free to access resource which will allow researchers across the world to apply for access to the data which can transform our understanding of dementias. By maintaining the data in an environment operating to the highest data protection standards, cohort participants and researchers can be reassured that the data are managed securely and responsibly; maintaining privacy whilst maximising scientific value. In addition, the large number of cohorts allows key research questions to be answered more rigorously and more rapidly than would otherwise be possible, with the aim of facilitating and accelerating the discovery of new ways to understand, diagnose, and treat dementia.
Benefits reported so far
The CFAS Study has a number of key findings to date which, as noted above, are used by policy makers, such as the dementia targets for GPs developed by NHS England, and in primary care settings in contributing to the planning of services for the ageing population, and particularly people with dementia:
1. A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies
I & II. This multi-centre population-based study powered to detect changes over time reported dementia incidence, estimating 209,600 new dementia cases per year. The study was uniquely designed to test for differences across geography and time.
At 2 years CFAS I interviewed 5,156 (76% response) with 5,288 interviewed in CFAS II (74% response). The University reported a 20% drop in incidence (95% CI: 0-40%), driven by a reduction in men across all ages > 65 years developing dementia.
2. Prevalence of Dementia in England and Wales – a two decade comparison –
Using CFAS I age and sex specific estimates of prevalence in individuals aged> 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 shows that the prevalence is lower (6.5%; 670 000), a decrease of 1.8% (odds ratio for CFAS II vs CFAS I 0.7, 95% CI 0.6-0.9, p=0.003). Sensitivity analyses suggest that these estimates are robust to the change in response.
This study provided further evidence that a cohort effect exists in dementia prevalence. Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century.
3. Changing non-participation in epidemiological studies of older people: Evidence from the
Cognitive function and Ageing Study I & II
Non- participation was found to be higher in CFAS II (45.3% than in CFAS I (18.3%). After adjustments were made for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.3 to 1.4; CFAS II 1.1 95% CI 1.1 to 1.2) Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, p=0.21; CFAS II, p=0.47).
4. Findings from the paper, Projections of multi-morbidity in the older population (2018) concludes between 2015-2035, numbers of older people with 4+ diseases will double and a third will have mental ill-health. Two thirds or more of the gain in years of life at age 65 will be years with 4+ long term conditions (complex multi-morbidity). These findings suggest the need to focus on prevention of and service provision for those with complex multi-mobidity addressing mid and later life risk factors.
5. The impact of dementia on service use by individuals with a comorbid health condition: a comparison of two cross sectional analyses conducted approximately 10 years apart. Holly Q Bennett, Sam Norton, Frances Bunn, Louise Robinson, Greta Rait, Claire Goodman, Carol Brayne and Fiona E Matthews. Bennett et al. BMC Medicine (2018) 16.114 https://doi.org/10.1186/s12916-018-1105-8. These findings show that less people are moving into care settings and more pressure is being put on unpaid carers. Future research is necessary to examine whether care is optimum and in line with national guidelines.
6. Is Frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Age and Ageing 2018; 0:1-7 doi:10.1093/ageing/afy077. The findings show the relationship between frailty and mortality did not significantly differ across the studies. Severe frailty as an indicator of mortality is shown to be a stable construct.
Datasets on the latest version
Legal basis for provision: Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information'
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death | Identifiable | Sensitive | Ongoing | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
| Demographics | Identifiable | Sensitive | Ongoing | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
| MRIS - Cohort Event Notification Report | Identifiable | Sensitive | Ongoing | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
| MRIS - Flagging Current Status Report | Identifiable | Sensitive | One-Off | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
| MRIS - Members and Postings Report | Identifiable | Sensitive | One-Off | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
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 applied to all 26 files released under this agreement, across every version. About opt-outs
No files recorded as released under the latest version. 26 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 4 versions — earlier versions existed before this site's records begin.
DARS-NIC-147829-5K4QP-v4.3 14 December 2021 to 13 December 2022
- Title
- MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 6
- Files released
- 0
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
What changed from DARS-NIC-147829-5K4QP-v3.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2021-12-14 | |
| End date | 2022-12-13 | |
| Civil Registrations of Death: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' | |
| Demographics: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' | |
| MRIS - Cause of Death Report: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' | |
| MRIS - Cohort Event Notification Report: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' | |
| MRIS - Flagging Current Status Report: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' | |
| MRIS - Members and Postings Report: legal basis | Other-For data subjects who have given informed consent, data is disseminated under Health and Social Care Act 2012 – s261(2)(c); for all other data subjects, data is disseminated under Health and Social Care Act 2012 - s261(7) and National Health Service Act 2006 - s251 - 'Control of patient information' |
Objective for processing
This agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage.
Background:
[6 paragraphs unchanged]
This Agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage.
[25 paragraphs unchanged]
The GDPR legal basis for processing the data held under this Agreement is Article 6(1)(e) (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j) (processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.
Unchanged: Processing activities, Expected output, Expected measurable benefits, Benefits reported.
DARS-NIC-147829-5K4QP-v3.2 21 May 2020 to 13 December 2021
- Title
- MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 6
- Files released
- 10
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
What changed from DARS-NIC-147829-5K4QP-v2.4
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
This agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage.
Background:
In the early 1980’s the University of Liverpool was funded by the Medical Research Council (MRC) to conduct a longitudinal study of the incidence of mental disorder in older people using the Geriatric Mental State Exam (GMS) this study was known as the Liverpool Study of Continuing Health in the Community. In 1989 a follow up study funded by the MRC began - the Ageing in Liverpool Health Aspects (ALPHA) study. The ALPHA study (MR490) comprising an urban sample of 6000 people aged 65+ from the city of Liverpool based on postal districts L1-L19, L24, L25-27.
In 1989 the MRC funded the Cognitive Function and Ageing Study (MR480) this study was based in Cambridge, Newcastle, Nottingham, Oxford and Gwynedd – baseline 1991-1993.
The population was selected from all those aged 65 years and over on the index date, living within a specified geographic location. Background information on the demographics of the populations sampled was collected from the Office of Population Census and Surveys (OPCS), 1990-91 Office of National Statistics, (ONS) to relate to regional and national data.
It was essential that the population lists used for sampling were as accurate as possible. Accurate prevalence rates could only be achieved if those who were confined to institutions (residential, care, nursing homes and long stay hospitals, were included in the sampling frame. Family Health Service Authority (FHSA) lists were used as the sampling frame. Each centre defined a precise geographic area, and the study population was drawn from all those who were resident within it. Problems of inaccuracy, patients who died or moved away but were still on the FHSA list, were resolved by asking GP surgeries to check the lists. In the event of a GP being unable to update the sampling list, the original list was used. Full details of the study background and sampling process can be found at: www.cfas.ac.uk.
MRC CFAS identified 2500 individuals aged 65 years and over, stratified by age and sex, (equal numbers aged 65-74 and 75>) within specific geographic locations in: Cambridgeshire, Newcastle, Nottingham, Oxford and Gwynedd.
All participants who consented to take part in the study, signed a consent form allowing the study access to their GP and other medical records. As was common practice at the time, medical research studies were flagged at ONS for date and cause of death. For the remaining un-consented sample, section 251 approval was granted to allow the study to receive - date and cause of death.
The ALPHA study was incorporated into the MRC CFAS study in 1991. The two studies have been receiving death notifications since the mid 1990’s from ONS. 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.
New generational cohorts have been established CFAS II and CFAS Wales (MR1280) which recruited people over the age of 65 from the same geographical areas, between 2008- 2013. The integration of these new cohorts provides the opportunity to address government policy of whether gains in active life expectancy have occurred between generations.
The ALPHA Study and MRC CFAS studies have run in tandem since 1991 with all identifiable data kept at the MRC Biostatistics Unit at Cambridge until 2017, at which point all data transferred to the Secure Data Hosting Service (SDHS) at the University of Cambridge in 2017 (for which the study received CAG approval 14/CAG/1025 – Amendment 1). Whilst other organisations were involved in these studies when they were live (i.e, 1989/91-2011), this involvement has now ceased. There are no other organisations involved in any of the decisions relating to the ongoing processing of data. Only the University of Cambridge determines the manner of data processing, and is, therefore, the sole data controller who also processes data for both ALPHA and MRC CFAS.
The purpose of this application is a request to bring together the two cohorts that are currently flagged separately by NHS Digital:
1) MR490 which represents The Ageing in Liverpool Health Aspects (ALPHA) Study cohort.
2) MR480 which represents The MRC Cognitive Function and Ageing Study (CFAS) cohort
There are subsequent studies under the Cognitive Function and Aging Study (CFAS) umbrella, specifically CFAS II and CFAS Wales, but these do not relate to this agreement.
Both cohorts fall under the wider MRC Cognitive Function and Ageing Study (MRC CFAS). The Office for National Statistics (ONS) requested the two cohorts be initially flagged separately but NHS digital suggested to the University of Cambridge in 2017 that for administrative ease the two cohorts should be brought together into one application as they are for the same use in the same study and both rely on the same S251 support.
The studies are longitudinal population based epidemiological studies based in six areas of the UK including: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd.
The Ageing in Liverpool Health Aspects (ALPHA) study, based in Liverpool was the first to recruit participants between 1989-1991, it had a slightly different initial study design to MRC CFAS but many aspects of its design and methodology enabled it to be integrated into the larger MRC Cognitive Function and Ageing Study (the other five centres (baseline 1991-1993)). The two studies have been run in tandem for over 25 years.
The two studies have together 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 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.
The purpose of the two studies:
1. To estimate the prevalence and incidence of cognitive decline and dementia and the range of variation of those two measures throughout England and Wales
2. To determine the natural history of dementia, in particular the rate of progression of cognitive decline including the distribution of the interval between the identification of cognitive impairment and death.
3. To evaluate the degree of disability associated with cognitive decline and the service needs this disability generates.
Subsidiary aims were:
1. To form the basis for longer term studies of trends over time and by birth cohort of the prevalence and incidence of cognitive decline.
2. To determine the contribution of different underlying pathologies to the rates of dementia and the geographic variation in these rates and to the burden of disability.
3. To identify factors associated with differing rates of cognitive decline and with the risk of dementia.
4. To act as a core resource and provide a framework to support specific sub-studies in each Centre (ALPHA and MRC CFAS) e.g.
a) The Resource implication study: - which investigated the resource implications to families and health and personal service providers for older people with mental and physical frailty, conducted in Cambridge, Newcastle, Nottingham and Oxford.
b) The Network Study: – described the nature and distribution of support networks of older people, conducted at Bangor University (Gwynedd)
c) The Healthy Ageing Study: – which examined the relationship between sociological, psychological and biological variables in a representative sample of the older population. Conducted in Cambridge and Nottingham.
d) Neuropathology and Neurology: – the aim to diagnose different types of dementia and interactions between classical cellular and molecular neuropathological structures through examination of the donated brain tissue – all centres.
e) Genetic Study: – bloods were taken and stored for analysis from a subgroup, part of the sample had DNA extracted and genetic analyses conducted – all centres.
Expected output
The CFAS studies (MRC CFAS, ALPHA, CFAS II and CFAS Wales) has published over 250 papers in high profile publications including the Lancet, BMJ, New England Journal of Medicine, Age and Ageing etc. All papers are available from our study website: www.cfas.ac.uk.
The CFAS study have, in conjunction with the CFAS II study (2008-Present), produced generational differences in dementia prevalence and incidence. The studies dementia diagnosis rates are currently used by NHS England.
Expected outputs:
Paper: Changing prevalence and treatment of depression among the over 65s over two decades: findings from the Cognitive Function and Ageing Study – British Journal of Psychiatry – in press.
Paper: Iba-1-/CD68+ microglia are a prominent feature of age-associated deep subcortical white matter lesions" PLOS ONE – in press
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 December 2018.
The CFAS study continues to provide study data to other researchers following approval from the CFAS management committee:
In the past year (2018) the study team have received 11 requests for anonymised study data including the following (this data is not NHS Digital data, but is derived from NHS Digital data):
Data only:
Exploring the role of survival bias in gender differences in cognitive decline, University of Cambridge 01/07/2018 – 31/12/2018
The influence of anti-depressants in older people with depression, Newcastle University 1/11/2018 – 31/03/2019
Identifying delirium in people in Parkinson’s disease (DETERMINE-PD) Newcastle University 1/12/18 – 1/12/19
Data/Brain tissue:
Dysregulation of nitric oxide synthases (NOS) expression in the ageing brain. 01/10/2018 – 31/08/2019
Defining the effects of Type 2 Diabetes on the Brain, University of Sheffield June 2019 – June 2020
It is expected that all of the above research will result in papers within nine months of the project completion dates.
In the past four years the study has led to the publication of 30 academic papers and there are currently papers on the following: Risk/frailty, projection of care costs, regional differences of life expectancy, Social isolation, education, mild cognitive impairment (MCI) and Neuropathology which are in draft, awaiting submission or awaiting acceptance by publications and expected in the next 4 months – 1 year.
All outputs and publications contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide.
Benefits reported
The CFAS Study has a number of key findings to date which, as noted above, are used by policy makers, such as the dementia targets for GPs developed by NHS England, and in primary care settings in contributing to the planning of services for the ageing population, and particularly people with dementia:
1. A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies
I & II. This multi-centre population-based study powered to detect changes over time reported dementia incidence, estimating 209,600 new dementia cases per year. The study was uniquely designed to test for differences across geography and time.
At 2 years CFAS I interviewed 5,156 (76% response) with 5,288 interviewed in CFAS II (74% response). The University reported a 20% drop in incidence (95% CI: 0-40%), driven by a reduction in men across all ages > 65 years developing dementia.
2. Prevalence of Dementia in England and Wales – a two decade comparison –
Using CFAS I age and sex specific estimates of prevalence in individuals aged> 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 shows that the prevalence is lower (6.5%; 670 000), a decrease of 1.8% (odds ratio for CFAS II vs CFAS I 0.7, 95% CI 0.6-0.9, p=0.003). Sensitivity analyses suggest that these estimates are robust to the change in response.
This study provided further evidence that a cohort effect exists in dementia prevalence. Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century.
3. Changing non-participation in epidemiological studies of older people: Evidence from the
Cognitive function and Ageing Study I & II
Non- participation was found to be higher in CFAS II (45.3% than in CFAS I (18.3%). After adjustments were made for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.3 to 1.4; CFAS II 1.1 95% CI 1.1 to 1.2) Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, p=0.21; CFAS II, p=0.47).
4. Findings from the paper, Projections of multi-morbidity in the older population (2018) concludes between 2015-2035, numbers of older people with 4+ diseases will double and a third will have mental ill-health. Two thirds or more of the gain in years of life at age 65 will be years with 4+ long term conditions (complex multi-morbidity). These findings suggest the need to focus on prevention of and service provision for those with complex multi-mobidity addressing mid and later life risk factors.
5. The impact of dementia on service use by individuals with a comorbid health condition: a comparison of two cross sectional analyses conducted approximately 10 years apart. Holly Q Bennett, Sam Norton, Frances Bunn, Louise Robinson, Greta Rait, Claire Goodman, Carol Brayne and Fiona E Matthews. Bennett et al. BMC Medicine (2018) 16.114 https://doi.org/10.1186/s12916-018-1105-8. These findings show that less people are moving into care settings and more pressure is being put on unpaid carers. Future research is necessary to examine whether care is optimum and in line with national guidelines.
6. Is Frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Age and Ageing 2018; 0:1-7 doi:10.1093/ageing/afy077. The findings show the relationship between frailty and mortality did not significantly differ across the studies. Severe frailty as an indicator of mortality is shown to be a stable construct.
DARS-NIC-147829-5K4QP-v2.4 25 March 2019 to 13 December 2021
- Title
- MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 16
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
What changed from DARS-NIC-147829-5K4QP-v1.17
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2019-03-25 | |
| MRIS - Cause of Death Report: legal basis | Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7) | |
| MRIS - Cause of Death Report: common law duty of confidentiality | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 | |
| MRIS - Cohort Event Notification Report: legal basis | Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7) | |
| MRIS - Cohort Event Notification Report: common law duty of confidentiality | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 | |
| MRIS - Flagging Current Status Report: legal basis | Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7) | |
| MRIS - Flagging Current Status Report: common law duty of confidentiality | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 | |
| MRIS - Members and Postings Report: legal basis | Health and Social Care Act 2012 – s261(2)(c); Health and Social Care Act 2012 – s261(7) | |
| MRIS - Members and Postings Report: common law duty of confidentiality | Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006 |
Objective for processing
This agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage. [32 paragraphs unchanged]
Processing activities
This agreement covers the release of data for the main study cohort under section 251, and for a sub-cohort of 47 participants who have given informed consent for data linkage to take place. [3 paragraphs unchanged] Only the core CFAS team (4 employees) has access to the identifiable [74 words unchanged] ID to collaborating researchers, but do not send identifiable data to them. This is not NHS Digital data, however, but it is derived from NHS Digital data. The information of whether people are dead or not is provided to these researchers based on the pseudonymised linked ID that is used throughout the entire study for sharing individual’s information to agreed researchers. This data relates both to the deceased and the living. There will be no attempt to re-identify by recipients of the derived data. [13 paragraphs unchanged]
Unchanged: Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
This agreement covers the release of data for the main cohort under section 251, and for a consented sub-cohort of 47 participants. The latter have consented to brain donation, which also includes consent for data linkage.
Background:
In the early 1980’s the University of Liverpool was funded by the Medical Research Council (MRC) to conduct a longitudinal study of the incidence of mental disorder in older people using the Geriatric Mental State Exam (GMS) this study was known as the Liverpool Study of Continuing Health in the Community. In 1989 a follow up study funded by the MRC began - the Ageing in Liverpool Health Aspects (ALPHA) study. The ALPHA study (MR490) comprising an urban sample of 6000 people aged 65+ from the city of Liverpool based on postal districts L1-L19, L24, L25-27.
In 1989 the MRC funded the Cognitive Function and Ageing Study (MR480) this study was based in Cambridge, Newcastle, Nottingham, Oxford and Gwynedd – baseline 1991-1993.
The population was selected from all those aged 65 years and over on the index date, living within a specified geographic location. Background information on the demographics of the populations sampled was collected from the Office of Population Census and Surveys (OPCS), 1990-91 Office of National Statistics, (ONS) to relate to regional and national data.
It was essential that the population lists used for sampling were as accurate as possible. Accurate prevalence rates could only be achieved if those who were confined to institutions (residential, care, nursing homes and long stay hospitals, were included in the sampling frame. Family Health Service Authority (FHSA) lists were used as the sampling frame. Each centre defined a precise geographic area, and the study population was drawn from all those who were resident within it. Problems of inaccuracy, patients who died or moved away but were still on the FHSA list, were resolved by asking GP surgeries to check the lists. In the event of a GP being unable to update the sampling list, the original list was used. Full details of the study background and sampling process can be found at: www.cfas.ac.uk.
MRC CFAS identified 2500 individuals aged 65 years and over, stratified by age and sex, (equal numbers aged 65-74 and 75>) within specific geographic locations in: Cambridgeshire, Newcastle, Nottingham, Oxford and Gwynedd.
All participants who consented to take part in the study, signed a consent form allowing the study access to their GP and other medical records. As was common practice at the time, medical research studies were flagged at ONS for date and cause of death. For the remaining un-consented sample, section 251 approval was granted to allow the study to receive - date and cause of death.
The ALPHA study was incorporated into the MRC CFAS study in 1991. The two studies have been receiving death notifications since the mid 1990’s from ONS. 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.
New generational cohorts have been established CFAS II and CFAS Wales (MR1280) which recruited people over the age of 65 from the same geographical areas, between 2008- 2013. The integration of these new cohorts provides the opportunity to address government policy of whether gains in active life expectancy have occurred between generations.
The ALPHA Study and MRC CFAS studies have run in tandem since 1991 with all identifiable data kept at the MRC Biostatistics Unit at Cambridge until 2017, at which point all data transferred to the Secure Data Hosting Service (SDHS) at the University of Cambridge in 2017 (for which the study received CAG approval 14/CAG/1025 – Amendment 1). Whilst other organisations were involved in these studies when they were live (i.e, 1989/91-2011), this involvement has now ceased. There are no other organisations involved in any of the decisions relating to the ongoing processing of data. Only the University of Cambridge determines the manner of data processing, and is, therefore, the sole data controller who also processes data for both ALPHA and MRC CFAS.
The purpose of this application is a request to bring together the two cohorts that are currently flagged separately by NHS Digital:
1) MR490 which represents The Ageing in Liverpool Health Aspects (ALPHA) Study cohort.
2) MR480 which represents The MRC Cognitive Function and Ageing Study (CFAS) cohort
There are subsequent studies under the Cognitive Function and Aging Study (CFAS) umbrella, specifically CFAS II and CFAS Wales, but these do not relate to this agreement.
Both cohorts fall under the wider MRC Cognitive Function and Ageing Study (MRC CFAS). The Office for National Statistics (ONS) requested the two cohorts be initially flagged separately but NHS digital suggested to the University of Cambridge in 2017 that for administrative ease the two cohorts should be brought together into one application as they are for the same use in the same study and both rely on the same S251 support.
The studies are longitudinal population based epidemiological studies based in six areas of the UK including: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd.
The Ageing in Liverpool Health Aspects (ALPHA) study, based in Liverpool was the first to recruit participants between 1989-1991, it had a slightly different initial study design to MRC CFAS but many aspects of its design and methodology enabled it to be integrated into the larger MRC Cognitive Function and Ageing Study (the other five centres (baseline 1991-1993)). The two studies have been run in tandem for over 25 years.
The two studies have together 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 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.
The purpose of the two studies:
1. To estimate the prevalence and incidence of cognitive decline and dementia and the range of variation of those two measures throughout England and Wales
2. To determine the natural history of dementia, in particular the rate of progression of cognitive decline including the distribution of the interval between the identification of cognitive impairment and death.
3. To evaluate the degree of disability associated with cognitive decline and the service needs this disability generates.
Subsidiary aims were:
1. To form the basis for longer term studies of trends over time and by birth cohort of the prevalence and incidence of cognitive decline.
2. To determine the contribution of different underlying pathologies to the rates of dementia and the geographic variation in these rates and to the burden of disability.
3. To identify factors associated with differing rates of cognitive decline and with the risk of dementia.
4. To act as a core resource and provide a framework to support specific sub-studies in each Centre (ALPHA and MRC CFAS) e.g.
a) The Resource implication study: - which investigated the resource implications to families and health and personal service providers for older people with mental and physical frailty, conducted in Cambridge, Newcastle, Nottingham and Oxford.
b) The Network Study: – described the nature and distribution of support networks of older people, conducted at Bangor University (Gwynedd)
c) The Healthy Ageing Study: – which examined the relationship between sociological, psychological and biological variables in a representative sample of the older population. Conducted in Cambridge and Nottingham.
d) Neuropathology and Neurology: – the aim to diagnose different types of dementia and interactions between classical cellular and molecular neuropathological structures through examination of the donated brain tissue – all centres.
e) Genetic Study: – bloods were taken and stored for analysis from a subgroup, part of the sample had DNA extracted and genetic analyses conducted – all centres.
Expected output
The CFAS studies (MRC CFAS, ALPHA, CFAS II and CFAS Wales) has published over 250 papers in high profile publications including the Lancet, BMJ, New England Journal of Medicine, Age and Ageing etc. All papers are available from our study website: www.cfas.ac.uk.
The CFAS study have, in conjunction with the CFAS II study (2008-Present), produced generational differences in dementia prevalence and incidence. The studies dementia diagnosis rates are currently used by NHS England.
Expected outputs:
Paper: Changing prevalence and treatment of depression among the over 65s over two decades: findings from the Cognitive Function and Ageing Study – British Journal of Psychiatry – in press.
Paper: Iba-1-/CD68+ microglia are a prominent feature of age-associated deep subcortical white matter lesions" PLOS ONE – in press
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 December 2018.
The CFAS study continues to provide study data to other researchers following approval from the CFAS management committee:
In the past year (2018) the study team have received 11 requests for anonymised study data including the following (this data is not NHS Digital data, but is derived from NHS Digital data):
Data only:
Exploring the role of survival bias in gender differences in cognitive decline, University of Cambridge 01/07/2018 – 31/12/2018
The influence of anti-depressants in older people with depression, Newcastle University 1/11/2018 – 31/03/2019
Identifying delirium in people in Parkinson’s disease (DETERMINE-PD) Newcastle University 1/12/18 – 1/12/19
Data/Brain tissue:
Dysregulation of nitric oxide synthases (NOS) expression in the ageing brain. 01/10/2018 – 31/08/2019
Defining the effects of Type 2 Diabetes on the Brain, University of Sheffield June 2019 – June 2020
It is expected that all of the above research will result in papers within nine months of the project completion dates.
In the past four years the study has led to the publication of 30 academic papers and there are currently papers on the following: Risk/frailty, projection of care costs, regional differences of life expectancy, Social isolation, education, mild cognitive impairment (MCI) and Neuropathology which are in draft, awaiting submission or awaiting acceptance by publications and expected in the next 4 months – 1 year.
All outputs and publications contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide.
Benefits reported
The CFAS Study has a number of key findings to date which, as noted above, are used by policy makers, such as the dementia targets for GPs developed by NHS England, and in primary care settings in contributing to the planning of services for the ageing population, and particularly people with dementia:
1. A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies
I & II. This multi-centre population-based study powered to detect changes over time reported dementia incidence, estimating 209,600 new dementia cases per year. The study was uniquely designed to test for differences across geography and time.
At 2 years CFAS I interviewed 5,156 (76% response) with 5,288 interviewed in CFAS II (74% response). The University reported a 20% drop in incidence (95% CI: 0-40%), driven by a reduction in men across all ages > 65 years developing dementia.
2. Prevalence of Dementia in England and Wales – a two decade comparison –
Using CFAS I age and sex specific estimates of prevalence in individuals aged> 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 shows that the prevalence is lower (6.5%; 670 000), a decrease of 1.8% (odds ratio for CFAS II vs CFAS I 0.7, 95% CI 0.6-0.9, p=0.003). Sensitivity analyses suggest that these estimates are robust to the change in response.
This study provided further evidence that a cohort effect exists in dementia prevalence. Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century.
3. Changing non-participation in epidemiological studies of older people: Evidence from the
Cognitive function and Ageing Study I & II
Non- participation was found to be higher in CFAS II (45.3% than in CFAS I (18.3%). After adjustments were made for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.3 to 1.4; CFAS II 1.1 95% CI 1.1 to 1.2) Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, p=0.21; CFAS II, p=0.47).
4. Findings from the paper, Projections of multi-morbidity in the older population (2018) concludes between 2015-2035, numbers of older people with 4+ diseases will double and a third will have mental ill-health. Two thirds or more of the gain in years of life at age 65 will be years with 4+ long term conditions (complex multi-morbidity). These findings suggest the need to focus on prevention of and service provision for those with complex multi-mobidity addressing mid and later life risk factors.
5. The impact of dementia on service use by individuals with a comorbid health condition: a comparison of two cross sectional analyses conducted approximately 10 years apart. Holly Q Bennett, Sam Norton, Frances Bunn, Louise Robinson, Greta Rait, Claire Goodman, Carol Brayne and Fiona E Matthews. Bennett et al. BMC Medicine (2018) 16.114 https://doi.org/10.1186/s12916-018-1105-8. These findings show that less people are moving into care settings and more pressure is being put on unpaid carers. Future research is necessary to examine whether care is optimum and in line with national guidelines.
6. Is Frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Age and Ageing 2018; 0:1-7 doi:10.1093/ageing/afy077. The findings show the relationship between frailty and mortality did not significantly differ across the studies. Severe frailty as an indicator of mortality is shown to be a stable construct.
DARS-NIC-147829-5K4QP-v1.17 14 December 2018 to 13 December 2021
- Title
- MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 0
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
Objective for processing
Background:
In the early 1980’s the University of Liverpool was funded by the Medical Research Council (MRC) to conduct a longitudinal study of the incidence of mental disorder in older people using the Geriatric Mental State Exam (GMS) this study was known as the Liverpool Study of Continuing Health in the Community. In 1989 a follow up study funded by the MRC began - the Ageing in Liverpool Health Aspects (ALPHA) study. The ALPHA study (MR490) comprising an urban sample of 6000 people aged 65+ from the city of Liverpool based on postal districts L1-L19, L24, L25-27.
In 1989 the MRC funded the Cognitive Function and Ageing Study (MR480) this study was based in Cambridge, Newcastle, Nottingham, Oxford and Gwynedd – baseline 1991-1993.
The population was selected from all those aged 65 years and over on the index date, living within a specified geographic location. Background information on the demographics of the populations sampled was collected from the Office of Population Census and Surveys (OPCS), 1990-91 Office of National Statistics, (ONS) to relate to regional and national data.
It was essential that the population lists used for sampling were as accurate as possible. Accurate prevalence rates could only be achieved if those who were confined to institutions (residential, care, nursing homes and long stay hospitals, were included in the sampling frame. Family Health Service Authority (FHSA) lists were used as the sampling frame. Each centre defined a precise geographic area, and the study population was drawn from all those who were resident within it. Problems of inaccuracy, patients who died or moved away but were still on the FHSA list, were resolved by asking GP surgeries to check the lists. In the event of a GP being unable to update the sampling list, the original list was used. Full details of the study background and sampling process can be found at: www.cfas.ac.uk.
MRC CFAS identified 2500 individuals aged 65 years and over, stratified by age and sex, (equal numbers aged 65-74 and 75>) within specific geographic locations in: Cambridgeshire, Newcastle, Nottingham, Oxford and Gwynedd.
All participants who consented to take part in the study, signed a consent form allowing the study access to their GP and other medical records. As was common practice at the time, medical research studies were flagged at ONS for date and cause of death. For the remaining un-consented sample, section 251 approval was granted to allow the study to receive - date and cause of death.
The ALPHA study was incorporated into the MRC CFAS study in 1991. The two studies have been receiving death notifications since the mid 1990’s from ONS. 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.
New generational cohorts have been established CFAS II and CFAS Wales (MR1280) which recruited people over the age of 65 from the same geographical areas, between 2008- 2013. The integration of these new cohorts provides the opportunity to address government policy of whether gains in active life expectancy have occurred between generations.
The ALPHA Study and MRC CFAS studies have run in tandem since 1991 with all identifiable data kept at the MRC Biostatistics Unit at Cambridge until 2017, at which point all data transferred to the Secure Data Hosting Service (SDHS) at the University of Cambridge in 2017 (for which the study received CAG approval 14/CAG/1025 – Amendment 1). Whilst other organisations were involved in these studies when they were live (i.e, 1989/91-2011), this involvement has now ceased. There are no other organisations involved in any of the decisions relating to the ongoing processing of data. Only the University of Cambridge determines the manner of data processing, and is, therefore, the sole data controller who also processes data for both ALPHA and MRC CFAS.
The purpose of this application is a request to bring together the two cohorts that are currently flagged separately by NHS Digital:
1) MR490 which represents The Ageing in Liverpool Health Aspects (ALPHA) Study cohort.
2) MR480 which represents The MRC Cognitive Function and Ageing Study (CFAS) cohort
There are subsequent studies under the Cognitive Function and Aging Study (CFAS) umbrella, specifically CFAS II and CFAS Wales, but these do not relate to this agreement.
Both cohorts fall under the wider MRC Cognitive Function and Ageing Study (MRC CFAS). The Office for National Statistics (ONS) requested the two cohorts be initially flagged separately but NHS digital suggested to the University of Cambridge in 2017 that for administrative ease the two cohorts should be brought together into one application as they are for the same use in the same study and both rely on the same S251 support.
The studies are longitudinal population based epidemiological studies based in six areas of the UK including: Cambridge, Newcastle, Nottingham, Oxford, Liverpool and Gwynedd.
The Ageing in Liverpool Health Aspects (ALPHA) study, based in Liverpool was the first to recruit participants between 1989-1991, it had a slightly different initial study design to MRC CFAS but many aspects of its design and methodology enabled it to be integrated into the larger MRC Cognitive Function and Ageing Study (the other five centres (baseline 1991-1993)). The two studies have been run in tandem for over 25 years.
The two studies have together 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 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.
The purpose of the two studies:
1. To estimate the prevalence and incidence of cognitive decline and dementia and the range of variation of those two measures throughout England and Wales
2. To determine the natural history of dementia, in particular the rate of progression of cognitive decline including the distribution of the interval between the identification of cognitive impairment and death.
3. To evaluate the degree of disability associated with cognitive decline and the service needs this disability generates.
Subsidiary aims were:
1. To form the basis for longer term studies of trends over time and by birth cohort of the prevalence and incidence of cognitive decline.
2. To determine the contribution of different underlying pathologies to the rates of dementia and the geographic variation in these rates and to the burden of disability.
3. To identify factors associated with differing rates of cognitive decline and with the risk of dementia.
4. To act as a core resource and provide a framework to support specific sub-studies in each Centre (ALPHA and MRC CFAS) e.g.
a) The Resource implication study: - which investigated the resource implications to families and health and personal service providers for older people with mental and physical frailty, conducted in Cambridge, Newcastle, Nottingham and Oxford.
b) The Network Study: – described the nature and distribution of support networks of older people, conducted at Bangor University (Gwynedd)
c) The Healthy Ageing Study: – which examined the relationship between sociological, psychological and biological variables in a representative sample of the older population. Conducted in Cambridge and Nottingham.
d) Neuropathology and Neurology: – the aim to diagnose different types of dementia and interactions between classical cellular and molecular neuropathological structures through examination of the donated brain tissue – all centres.
e) Genetic Study: – bloods were taken and stored for analysis from a subgroup, part of the sample had DNA extracted and genetic analyses conducted – all centres.
Expected output
The CFAS studies (MRC CFAS, ALPHA, CFAS II and CFAS Wales) has published over 250 papers in high profile publications including the Lancet, BMJ, New England Journal of Medicine, Age and Ageing etc. All papers are available from our study website: www.cfas.ac.uk.
The CFAS study have, in conjunction with the CFAS II study (2008-Present), produced generational differences in dementia prevalence and incidence. The studies dementia diagnosis rates are currently used by NHS England.
Expected outputs:
Paper: Changing prevalence and treatment of depression among the over 65s over two decades: findings from the Cognitive Function and Ageing Study – British Journal of Psychiatry – in press.
Paper: Iba-1-/CD68+ microglia are a prominent feature of age-associated deep subcortical white matter lesions" PLOS ONE – in press
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 December 2018.
The CFAS study continues to provide study data to other researchers following approval from the CFAS management committee:
In the past year (2018) the study team have received 11 requests for anonymised study data including the following (this data is not NHS Digital data, but is derived from NHS Digital data):
Data only:
Exploring the role of survival bias in gender differences in cognitive decline, University of Cambridge 01/07/2018 – 31/12/2018
The influence of anti-depressants in older people with depression, Newcastle University 1/11/2018 – 31/03/2019
Identifying delirium in people in Parkinson’s disease (DETERMINE-PD) Newcastle University 1/12/18 – 1/12/19
Data/Brain tissue:
Dysregulation of nitric oxide synthases (NOS) expression in the ageing brain. 01/10/2018 – 31/08/2019
Defining the effects of Type 2 Diabetes on the Brain, University of Sheffield June 2019 – June 2020
It is expected that all of the above research will result in papers within nine months of the project completion dates.
In the past four years the study has led to the publication of 30 academic papers and there are currently papers on the following: Risk/frailty, projection of care costs, regional differences of life expectancy, Social isolation, education, mild cognitive impairment (MCI) and Neuropathology which are in draft, awaiting submission or awaiting acceptance by publications and expected in the next 4 months – 1 year.
All outputs and publications contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide.
Benefits reported
The CFAS Study has a number of key findings to date which, as noted above, are used by policy makers, such as the dementia targets for GPs developed by NHS England, and in primary care settings in contributing to the planning of services for the ageing population, and particularly people with dementia:
1. A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies
I & II. This multi-centre population-based study powered to detect changes over time reported dementia incidence, estimating 209,600 new dementia cases per year. The study was uniquely designed to test for differences across geography and time.
At 2 years CFAS I interviewed 5,156 (76% response) with 5,288 interviewed in CFAS II (74% response). The University reported a 20% drop in incidence (95% CI: 0-40%), driven by a reduction in men across all ages > 65 years developing dementia.
2. Prevalence of Dementia in England and Wales – a two decade comparison –
Using CFAS I age and sex specific estimates of prevalence in individuals aged> 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 shows that the prevalence is lower (6.5%; 670 000), a decrease of 1.8% (odds ratio for CFAS II vs CFAS I 0.7, 95% CI 0.6-0.9, p=0.003). Sensitivity analyses suggest that these estimates are robust to the change in response.
This study provided further evidence that a cohort effect exists in dementia prevalence. Later-born populations have a lower risk of prevalent dementia than those born earlier in the past century.
3. Changing non-participation in epidemiological studies of older people: Evidence from the
Cognitive function and Ageing Study I & II
Non- participation was found to be higher in CFAS II (45.3% than in CFAS I (18.3%). After adjustments were made for confounders, in both CFAS I and CFAS II, women were more likely to decline to take part (CFAS I: odds ratio (OR) 1.3 95% confidence interval (CI) 1.3 to 1.4; CFAS II 1.1 95% CI 1.1 to 1.2) Deprivation was associated with non-participation in both studies (highest versus lowest Townsend deprivation quintile, CFAS I: OR 1.4 95% CI 1.2 to 1.6; CFAS II: 2.0 95% CI 1.8 to 2.2). Age was not associated with non-participation in either study (CFAS I, p=0.21; CFAS II, p=0.47).
4. Findings from the paper, Projections of multi-morbidity in the older population (2018) concludes between 2015-2035, numbers of older people with 4+ diseases will double and a third will have mental ill-health. Two thirds or more of the gain in years of life at age 65 will be years with 4+ long term conditions (complex multi-morbidity). These findings suggest the need to focus on prevention of and service provision for those with complex multi-mobidity addressing mid and later life risk factors.
5. The impact of dementia on service use by individuals with a comorbid health condition: a comparison of two cross sectional analyses conducted approximately 10 years apart. Holly Q Bennett, Sam Norton, Frances Bunn, Louise Robinson, Greta Rait, Claire Goodman, Carol Brayne and Fiona E Matthews. Bennett et al. BMC Medicine (2018) 16.114 https://doi.org/10.1186/s12916-018-1105-8. These findings show that less people are moving into care settings and more pressure is being put on unpaid carers. Future research is necessary to examine whether care is optimum and in line with national guidelines.
6. Is Frailty a stable predictor of mortality across time? Evidence from the Cognitive Function and Ageing Studies. Andria Mousa, George M Savva, Arnold Mitnitski, Kenneth Rockwood, Carol Jagger, Carol Brayne, Fiona E Matthews. Age and Ageing 2018; 0:1-7 doi:10.1093/ageing/afy077. The findings show the relationship between frailty and mortality did not significantly differ across the studies. Severe frailty as an indicator of mortality is shown to be a stable construct.
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.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 3 versions: DARS-NIC-147829-5K4QP-v1.17, DARS-NIC-147829-5K4QP-v2.4, DARS-NIC-147829-5K4QP-v3.2
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January 2022
1 version added: DARS-NIC-147829-5K4QP-v4.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-147829-5K4QP, “MR480 - MRC Study of Cognitive Function and Ageing MR490 - Alpha Study (Liverpool)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-147829-5k4qp/ (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-147829-5K4QP to see the original rows.