Cohort Descriptives

Variable Response
Cohort name Cognitive Function in Ageing Study II
Cohort acronym CFAS II
General Study Overview CFAS II started in 2008, and builds on the design and infrastructure of CFAS I. It will provide data on generational and geographical differences including people in institutions. It will also provide important base-line information on older people aged 65-84 in 2007-2008 who will reach the age of greatest frailty during the 2020s when the peak in the number of people aged 85 or over is expected and at a time when major therapeutic interventions for dementia could be expected to have an effect. Participants were followed up by interview.
Objectives of core CFAS II include:
• To provide profiles of cognitive and physical function, physical and mental health and disability of people aged 65 or over in three of the original CFAS centres.
• To investigate whether the measures that characterise the intermediate stage (Mild Cognitive Impairment) best within original CFAS are stable across generations.
• To quantify medication and health and social service use, social support, residential characteristics and care states, including formal and informal care, of people with dementia, frailty or physical disability across the three sites, to measure population differences over 16 years and to assess differences between urban and rural settings, and the new relationships between health, social factors and service receipt.
• To compare healthy active life expectancy over time for the whole group and within social groups and assess whether over the last 16 years educational and occupational social groups have experienced differential change and whether there has been a trade off between physical and mental health expectancy.
• To assess the contribution of different diseases, particularly dementia to any change in the burden of disability over time, specifically whether diseases have become more or less disabling and estimate the effect of prevention vs. treatment.
• To compare the size of relationship of known genetic factors with frailty including cognitive impairment under different scenarios about future trends in cognitive impairment and disability.
• To provide a foundation for other collaborative studies that investigates biomarkers and further investigation of early markers, including imaging, for risk of cognitive decline.
Number of subjects at baseline 7,524
Institution name University of Cambridge
Department name Institute of Public Health
City Cambridge
Study or database website

http://www.cfas.ac.uk

Principal Investigator (PI): Name Prof Carol Brayne
PI: Address Cambridge Institute of Public Health, Forvie Site, University of Cambridge, School of Clinical Medicine, Cambridge Biomedical Campus, Cambridge, CB2 0SR
PI: email

carol.brayne@medschl.cam.ac.uk

PI: phone 01223 330300
Administrative Contact (AC): Name Mrs Linda Barnes
AC: Address Cambridge Institute of Public Health, Forvie Site, University of Cambridge, School of Clinical Medicine, Cambridge Biomedical Campus, Cambridge, CB2 0SR
AC: email Leb22@medschl.cam.ac.uk
AC: phone 01223 330312
Technical Contact/Data manager (TC): Name Emma Green
TC: Address Cambridge Institute of Public Health, Forvie Site, University of Cambridge, School of Clinical Medicine, Cambridge Biomedical Campus, Cambridge, CB2 0SR
TC: email

ep382@medschl.cam.ac.uk

TC: phone 01223 330312
Key study references

Open literature list

Population based study? Yes
Family based study? No
Clinical based sample? No
Is there follow-up data available? Yes
Were participants included prior to development of dementia (may refer to controls only)? Yes
Were participants included prior to development of MCI (may refer to controls only)? Yes
How is data collected? In person
Who carries out data collection? Interviewers
Does this take place in participants' homes or at a central location? Home
Do participants take part individually or are families/partners involved? Individually
Family: An informant interview for those with a cognitively impaired profile, and for a random selection of those without, was requested for 20% of the sample.
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data No
Was diagnosis/primary outcomes made blind to exposure variables? No
How many times followed up? 2
How regular is follow-up? Every 2-3 years
Every 2-3 years: 2 year follow up: Wave 1 (Baseline) and Wave 2 (2 years later). Wave 3 planned for late 2015.
Study start date 2008-01-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria Born before 1942.
Speaks English proficiently.
Lives in the cohort catchment area.
Exclusion criteria Born after 1942.
Anyone not proficient in English will be excluded from the sample.

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia Yes
Age at last follow-up Yes
Age at time of death Yes
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Gait assessment Data available
Specify any others Measures of hearing and visual impairment (as at baseline), plus a further hearing test by HearCheck Screener to estimate hearing loss.
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Age of onset (relative to dementia) known: Self reported interview.
Medication use for CVD Data available
Age of onset (relative to dementia) known
Hypertension Data available
Age of onset (relative to dementia) known
Hypercholesterolemia No
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Cancer Data available
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Other cognitive tasks The CAMCOG can be divided in several subscales: orientation, expressive and comprehensive language, memory (remote, recent, and learning), attention, praxis, calculation, abstraction, and perception.
IQ data available? No
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition Cambridge Examination for Mental Disorders in the Elderly, including CAMCOG (Huppert et al., 1995). CAMCOG available for N= 7,085 (91%) in Wave 1 and N= 5,109 (97%) in Wave 2.
Automated Geriatric Examination for Computer Assisted Taxonomy (AGECAT, Copeland et al., 1986).

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia Yes
Lewy Body Disease No
Huntingtons Disease No
Parkinsons Disease No
Frontotemporal dementia No
Vascular dementia No
MCI Yes
Subjective complaint Yes
Dementia diagnosis (Other comments) Yes
Functional rating scales
Any information on dementia rating collected? Yes
ADCS-ADL No
ADCS-ADL-MCI No
Blessed Dementia Scale Yes
Comments: As part of the History and Aetiology Schedule (HAS).
Clinical dementia rating scale (CDR) No
Complex Activities of Daily Living No
Dependence Scale No
Functional Assessment Questionniare (FAQ) No
FAST No
Global Deterioration Scale (GDS) No
Katz ADL No
Lawton IADL No
PDQ39 (PD specific) No
UPDRS (PD specific) No
Hoehn and Yahr (PD specific) No
Schwab and England (PD specific) No
UHDRS (HD specific) No
Specify any other dementia rating scales Comprehensive assessments of daily living and health from self reported interview.
Any information on subjective complaints collected? Yes
Specify any other scales Incorporated within the study questionnaire.
Any neuropsychiatric rating scale administered? Yes
Aggression Scale No
Beck Depression Inventory No
Behave-AD No
Center for Epidemiologic Studies Depression scale (CES-D) No
Connor-Davidson Resilience Scale No
Cornell depression Scale No
Geriatric Depression Scale (GDS) No
Hamilton depression rating scale (HDRS) No
Montgomery-Asberg depression scale (MADRS) No
NPI No
NPI-Q No
Speilberger State Anxiety Scale No
Hospital anxiety depression scale/psychiatry (HADS) No
Specify any other scales Yes
Any Quality of Life Data Colllected? Yes
Quality of Life-Alzheimers Disease (QOL-AD) No
Dementia Quality of Life Instrument (DEMQOL) No
Discomfort Scale for Dementia of Alzheimers Type (DS-DAT) No
Progressive Deterioration Scale (PDS) No
Quality of Life in Late-Stage Dementia Scale (QUALID) No
Bedfords Alzheimers Nursing Severity Scale(BANS-S) No
EQ-5DVAS No
Short Form (SF) 36 No
Health Utilities Index 1, 2 or 3 No
Specify any other quality of life scales Comprehensive assessments of quality of life and health from self reported interview.
Any information on Caregivers and Caregiving Collected? Yes
Caregivers for Alzheimers disease Problems Scale (CAPS) No
Community Dementia Quality of Life Profile (CDQLP) No
COQoL-AD No
Dementia Management Strategies Scale (DMSS) No
Caregiver Activity Survey (CAS) No
Quality of life of caregivers (CQOL) No
Screen for Caregiver Burden/Time Spent Caregiving (TSC) No
Work Productivity and Activity Impairment Questionnaire-dyad version (WPAI-DYAD) No
Zairit Burden No
Specify any other caregiver scales Informants interviewed about care giving.
Health service utilisation
Any Health Resource Utilisation Collected ? Yes
Hospital utilisation Yes
Prescription Medicine Cost No
Over the Counter Drug Costs No
Nursing Home Costs No
Costs of Visits to Specialists (out-patient) No
Costs of Home-Care No
Admission to nursing home Yes
Admission to home care Yes
Day care at nursing home Yes
Day care at home for elderly Yes
Home care- domestic Yes
Home care- personal care Yes
Home care- nursing Yes
Physical therapist Yes
Care of community mental health team Yes
Permanent stay at nursing home Yes
Informal ADL care Yes
Informal iADL care Yes
Days of work absence if having a paid job No
Other neurological or psychiatric measurements? Yes
Any stroke data? Yes
Stroke type No
Transient Ischemic Attack Yes
Carotid plaques No
Any head trauma data? Yes
Loss of consciousness Yes
Sports, soccer and boxing No
Head trauma severity No
BISQ or equivalent No
EEG No
Psychiatric evaluations Yes
CESD scale (depression) No
Personality evaluation Yes
Personality evaluation comments Comments: Informant interview.
Apathy evaluation Yes
Anxiety measure Yes
Resilience evaluation No

Imaging

Variable Response
Structural T1 Not acquired
Not acquired
Fluid attenuation inversion recovery (FLAIR) Not acquired
Not acquired
Diffusion imaging (DTI/DWI) Not acquired
Not acquired
f-MRI (task) Not acquired
Not acquired
f-MRI (rest) Not acquired
Not acquired
PET Not acquired
Not acquired
SPECT Not acquired
Not acquired
MEG Not acquired
Not acquired
In vivo Spectroscopy Not acquired
Not acquired
Do you use an imaging data management system (e.g. XNAT or LORIS)? No

Genetics

Variable Response
Overview
N APOE genotyped Controls N
Controls N: 7524
Gene screening
APOE Yes
Estimated N: 7524
TREM2 No
APP No
PSEN1 No
PSEN2 No
GRN No
MAPT No
C9ORF72 No
VCP No
CHMP2B No
TDP-43 No
PRNP No
SNCA No
LRRK2 No
PINK1 No
PARK2 No
PARK7 No
NOTCH3 No
CST3 No
TTR No
GSN No
ITM2B No
HTT No
NPC1 No
NPC2 No

Biological samples

Variable Response
Blood collected No
Plasma No
Serum No
RNA No
DNA No
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
CRP (c-reactive protein) No
eGFR (estimated Glomular Filtration Rate) No
Glucose No
HbA1c No
Lipids No
Liver Function Tests No
Serum creatinine No
Homocysteine No
Folate No
Other blood samples No
Are laboratory protocols and storage information available for bloods No
Urine collection
Urine No
Autopsy data
Autopsy No
Measurements already performed No
Saliva
Saliva collected Yes
Cortisol No
Are laboratory protocols and saliva storage information available? Yes
CSF
CSF collected No
Are CSF laboratory protocols and storage information available? No
mtDNA abnormalities No
Oxidative stress No

Brain donation

Variable Response
Is brain donation part of the existing protocol? Yes
Are information sheets made available to representative or consultees? Yes
Are retrospective interviews carried out after the participant's death? Yes
Is there a procedure for declining donation/failed recruitment/project termination? Yes
Has an actuarial analysis been completed? Yes

Lifestyle

Variable Response
Smoking Yes
Pack years Data available
Current smoking Data available
Former smoking Data available
Alcohol Data available
Units per day/week vs weekend Data available
Specified beverage type (wine, spirits, beers) Data available
Abstainers/former users Data available
Binge drinking Data available
Drugs of abuse assessment
Drugs of abuse assessment - Data available? Data available
Comments: "Have you ever taken any other substances? (i.e. Opium (Heroin), Cannabis or any other possibilities"
Obesity and associated risk factors
Type of exercise: heavy, light Data available
Exercise duration Data available
Diet Yes
Other dietary items No
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Comments: Townsend deprivation scores. Townsend, P., Phillimore, P., & Beattie, A. (1988). Health and deprivation: inequality and the North. Routledge.
Sleep assessment

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? No.
Do existing mechanisms for consulting/involving participants exist? Workshops for participants.
Alzheimer's Society PPI group.
If so, does this happen on an ongoing or an ad hoc basis? Ad hoc.
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? Professor Bronwyn Parry, an ethics expert, sits on the management committee and an ELSI group as part of the CFAS II interventions working group.
If yes, who is represented on it? NA
Does the cohort include participants who lack capacity? Yes
Is there a process in place for participants who lose capacity? Yes
Do participants provide contact information for a person to act as a potential consultee? Yes
Disclosure
Do procedures exist for the disclosure of incidental findings? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Hearing test only. Dementia results are not passed on.
Who is responsible for disclosing incidental findings? Research team informs the GP and the GP informs participant.
Do procedures exist for the disclosure of clinically relevant information identified as a direct focus of the study? (e.g. a diagnosis of dementia) No
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? Individuals ascertained from the general practitioners will, after approval from the GP, receive a letter from the GP followed by personal approach by interviewers. Interviewers will be recruited and trained, initially at Cambridge with completion at each site by the fieldwork lead using the methods developed for CFAS. Regular meetings and rating sessions will ensure quality control with two meetings to discuss progress. Participants were randomly selected from National Health Service records. The only information provided to MRC CFAS was the name, address, sex, and date of birth, all of this information has been processed by us in accordance with the Data Protection Act 1998.
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? No
Consent and recontact
Is there consent for recontact? Yes

Data Management

Variable Response
Consent for linkage to routine data
Which parts of the UK are represented by participants in your cohort? England
England
Wales