Cohort Descriptives

Variable Response
Cohort name Cognitive Function and Ageing Study
Cohort acronym MRC CFAS
General Study Overview MRC CFAS started in the late 1980s with the initial aim of investigating dementia and cognitive decline in a representative sample of people aged over 65 years. To date there have been in the region of 47,000 interviews with participants in the study. The range of information collected has also allowed the study to investigate depression and physical disability in the older population and also look at healthy active life expectancy. Following baseline interviews, subsets of the cohort have been contacted for 1, 2, 6 and 8 year follow up and the whole sample were contacted for a 10 year follow up. There have also been 500 donations of participant’s brains after death. The aims of the study have evolved over its existence and cover a wide range including descriptive epidemiology, neuropathology, policy, molecular epidemiology, and ethics.
Number of subjects at baseline 18,005
Institution name University of Cambridge
Department name Institute of Public Health
City Cambridge
Study or database website

https://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 Lu Gao
TC: Address MRC Biostatistics Unit, Cambridge Biomedical Campus, Cambridge Institute of Public Health, Forvie Site, Robinson Way, Cambridge CB2 0SR
TC: email

lu.gao@mrc-bsu.cam.ac.uk

TC: phone 01223 330392
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: Mainly research interviewers, although a number of research nurses have taken blood.
Does this take place in participants' homes or at a central location? Home
Central
Do participants take part individually or are families/partners involved? Individually: Participants who require an informant would have an informant interview as defined by the computer algorithm carried out as part of the cognitive assessments. Retrospective informant interviews were carried out in the event of brain donation.
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data No
How many times followed up? 6
How regular is follow-up? Every 2-3 years
Every 2-3 years: Some had 6 or more Waves of interview. Brain donation participants are interviewed every 2-3 years.
Less often: A subset were seen only at baseline, incidence screen (2-3 years later) and then 10 years later.
Study start date 1989-01-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria 65 years and over.
Speaks English proficiently.
Lives in the cohort catchment area.
Exclusion criteria Anyone not proficient in English would 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
Cardiovascular examination Data available
Respiratory examination Data available
Gait assessment Data available
Opthalmic examination 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
Medication use for CVD Data available
Hypercholesterolemia No
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Cancer Data available
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available
Visuospatial Function Data available
Data available
Attention Data available
Data available
Language Data available
Data available
Working memory Data available
Data available
Latent memory Data available
Data available
Abstraction Data available
Data available
Other cognitive tasks CAMCOG: 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? Yes
NART 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 Yes
Comments: ACE
3MS No
GPCOG No
Other assessments of global cognition Cambridge Examination for Mental Disorders in the Elderly, including CAMCOG (Huppert et al., 1995).

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.
The assessment interview was mainly the Geriatric Mental State Examination (GMS) adapted for CFAS, a structured psychiatric interview, which collected sufficient information for algorithmic ‘diagnosis’ in the major psychiatric disorders of old age (dementia, depression, anxiety, and psychosis). The interviews were augmented with questions from the CAMDEX (Cambridge Examination for Mental Disorders in the Elderly) including CAMCOG, the longer neuropsychological assessment. The relative or carer interview was mainly the History and Aetiological Schedule, the informant interview that accompanies the GMS (from Brayne et al., 2006).
Any information on subjective complaints collected? Yes
Specify any other scales The neuropathological assessment followed the standardised protocol of the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD), with the exception that the neuropathologist was blind to the interview data (from Brayne et al., 2006).
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
Any Quality of Life Data Colllected? Yes
Quality of Life-Alzheimers Disease (QOL-AD) 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.
CFAS used a measure of disability based on basic activities of daily living (BADL)
and instrumental activities of daily living (IADL, Jagger et al., 2001). Self rated health: participants were asked to rate their own health as excellent, good, fair or poor compared to others of the same age (Bond et al., 2006).
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 were interviewed about care giving.
Health service utilisation
Any Health Resource Utilisation Collected ? Yes
Hospital utilisation No
Prescription Medicine Cost Yes
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 No
Care of community mental health team No
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 Yes
Transient Ischemic Attack No
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 No
Apathy evaluation No
Anxiety measure No
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 Whole genome sequenced No
N APOE genotyped Cases N
Cases N
Controls N
Gene screening
APOE Yes
Subgroup
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 Yes
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
Urine collection
Urine No
Autopsy data
Autopsy Details: See brain banking
Saliva
Saliva collected Yes
CSF
CSF collected No
mtDNA abnormalities No
Oxidative stress No
synuclein 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
Obesity and associated risk factors
Type of exercise: heavy, light Data available
Exercise duration Data available
Occupation possible job matrices Data available
Diet No
Other dietary items No
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
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? The research team have organised workshops for participants to update on changes to the protocol and to assess their attitudes to aspects of the research.
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? Yes, two people on the Management Committee and the Biological resource.
If yes, who is represented on it? There are representatives from Alzheimer's Society, Age Concern (Age UK), hospital chaplaincy
Does the cohort include participants who lack capacity? No
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) Blood testing that showed a result that may be clinically significant.
Who is responsible for disclosing incidental findings? Study team reports to GP.
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)? Background information on the demographics of the populations sampled was collected from the Office of Population Census and Surveys (OPCS), 1990–91 census now Office of National Statistics (ONS), to relate to regional and national data. Family Health Service Authority (FHSA) lists were used as the sampling frame.
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? Yes
Consent and recontact
Is there consent for recontact? Yes
If so, under what conditions? The participants would be contacted through the CFAS team.

Data Management

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