Cohort Descriptives

Variable Response
Cohort name Cambridge Centre for Ageing and Neuroscience
Cohort acronym Cam-CAN
General Study Overview The aim of the Cambridge Centre for Ageing and Neuroscience (Cam-CAN) project is to identify the neural mechanisms underpinning successful cognitive ageing. The study used epidemiological, behavioural, and neuroimaging data to understand how individuals can best retain cognitive abilities into old age. A major aim of the research programme is to understand the nature of brain-cognition relationships across the lifespan, and to highlight the importance of abilities that are maintained into old age.
The study was not designed to have repeated measures for each participant, but rather as one extended and comprehensive study visit that took places over 3 stages.
Number of subjects at baseline Approx 2700 had the Stage 1 interview, 700 at Stage 2, 280 at Stage 3.
Institution name University of Cambridge
Department name Department of Psychology
City Cambridge
Study or database website

http://www.cam-can.com

Principal Investigator (PI): Name Professor Lorraine Tyler
PI: Address Professor of Cognitive Neuroscience, Department of Psychology, University of Cambridge, Cambridge CB2 3EB, UK
PI: email

lkt10@hermes.cam.ac.uk

PI: phone 01223 766457
Administrative Contact (AC): Name Dr Darren Price
AC: Address Department of Psychology, University of Cambridge, Downing Street, Cambridge, CB2 3EB
AC: email Datamanager@cam-can.com
AC: phone 01223 355 294
Technical Contact/Data manager (TC): Name Dr Darren Price
TC: Address Department of Psychology, University of Cambridge, Downing Street, Cambridge, CB2 3EB
TC: email

datamanager@cam-can.com

TC: phone 01223 355 294
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? Central
Do participants take part individually or are families/partners involved? Individually
Dementia cases ascertained as part of study: No
How many times followed up? 2
Study start date 2010-10-01
Study end date 2016-03-31
Is study ongoing? No
Is study still recruiting? No
Inclusion criteria For Stage 1:
Aged 18+
Capacity to consent.
Resident within Cambridge City.
Not been excluded by GP.
Points at the interview where it could be truncated based on tailoring the sample to the inclusion criteria for Stage 2 and 3.
Exclusion criteria For continuation to Stages 2 and 3 :
MMSE score 24 or less (calculated in interview).
Missing MMSE scores (assumed to be 24 or less).
Severe memory defect.
Consent difficulties for next stage.
Communication difficulties: Hearing problems (difficulty completing interview with hearing aid, inability to hear 35 db at 1000 Hz in either ear in interview functional hearing screening, hearing aid that cannot be removed).
Insufficient English language.
Vision difficulties (correct near vision of 20/100 or worse with both eyes).
Medical problems (self-report of diagnosis): Dementia diagnosis/Alzheimer's Disease.
Parkinson's disease.
Motor Neurone disease.
Multiple Sclerosis.
Cancer (history of brain tumour or chemotherapy/radiotherapy for any cancer in last 6 months).
Stroke.
Encephalitis.
Meningitis.
Epilepsy.
Head injury with serious results (coma, unconscious for >2 hrs, or skull fracture).
Recently diagnosed or uncontrolled high blood pressure.
Pregnancy or trying to become pregnant.
Current serious psychiatric conditions (bipolar disorder, schizophrenia, or psychosis).
Mobility problems Restricted mobility which would prevent further participation.
Inability to walk 10 metres.
Substance abuse: Past or current treatment for drug abuse.
Current drug usage.
Refusal to answer substance abuse questions.
Specific MRI/MEG safety and comfort exclusions:
Heart operation.
Blood vessel procedure or device (carotid artery vascular clamp, venous umbrella, stent, filter or coil, Swan-Ganz catheter, vascular access ports or catheters).
Neurostimulator or spinal fusion stimulator.
Electrodes on body, head or brain.
Pump, Implant or pacemaker.
Brain Operation.
Metal splinters in eye, head or ear.
Shrapnel, buckshot or bullet in body.
Wire sutures or surgical staples.
Artificial joints that are MRI incompatible (jaw/maxillary reconstruction, shoulder prosthesis, any other joint replacement surgery in the last 3 months).
Bone fixation rods or plates in jaw, head, shoulders or spine.
Non-removable dental brace.
Non-removable prosthesis or removable eye prosthesis.
Inability to lie flat for an hour.
Claustrophobia.
Body piercings that cannot be removed.
IUD that is MRI incompatible.
Transdermal delivery patches that cannot be removed.
Tattoos on head face or neck.

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia No
Age at last follow-up Yes
Age at time of death No
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Assessed before onset of dementia
Comments: Stage 2 and 3
Weight Data available
Assessed before onset of dementia
Comments: Stage 2 and 3
Height Data available
Assessed before onset of dementia
Comments: Stage 2 and 3
Heart Rate Data available
Assessed before onset of dementia
Comments: Stage 2 and 3 only.
ECG Comments: Part of MEG only
Opthalmic examination Data available
Assessed before onset of dementia
Comments: Self reported eye sight problems and Snellen test of near vision.
Acuity Data available
Assessed before onset of dementia
Colour vision Comments: Short term colour memory test incorporated into the cognitive battery (see Cognitive section).
Specify any others The Siemens HearCheck Screener tests participants hearing for three sound pressure levels (75 dB SPL, 55 dB SPL, and 35 dB SPL) at two frequencies (1000 Hz and 3000 Hz) at Stage 1. The test is performed without hearing correction (i.e. hearing aids) to mimic conditions in the MRI and MEG sessions of Stage 3 (not Stage 2). Self reported hearing problems also collected.
Self reported general health.
Chair rises.
Balance test.
Falls and mobility.
Family history.
Medical conditions
Cardiovascular disease data Yes: Self reported.
Myocardial infarction Data available
Comments: Self reported.
Medication use for CVD Data available
Comments: Self reported.
Hypertension Data available: Self reported.
Systolic/diastolic BP Data available
Comments: Stages 2 and 3 only.
Hypercholesterolemia No
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Cancer Data available
Comments: Self report.
Diabetic Status Data available
Comments: Self report.

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available
N (estimate) : 700
List all tests: Short term colour memory (Zhang and Luck, 2008).
Computerised
Verbal Memory Data available
Data available
N (estimate): 2700
List all tests: Remembering a story (see Episodic memory under 'Other').
Pen and paper
Reaction time Data available
Data available
N (estimate): 2700
List all tests: Simple reaction time and Choice reaction time
Language Data available
Data available
N (estimate): Approx 2700 for verbal fluency and 700 for tip-of-tongue and comprehension tasks.
List all tests: As well as the verbal fluency: 1 min phonemic (Letter P) and 1 min semantic (animals) tasks, tip-of-the-tongue, and proverb and sentence comprehension.
Pen and paper
Planning Data available
Data available
N (estimate): Approx 700
Comments: Participants are asked to spend 10 minutes engaged in hotel-themed tasks, dividing their time between five tasks. Critically, there is insufficient time to complete any task so that the participant must spontaneously organise their time to ensure they sample all tasks.
List all tests: Hotel task
Pen and paper: Table Top
Other cognitive tasks Stage 1 interview (N = approx 2700):
Self Reported Memory Problems: The Cambridge Memory Questionnaire (the Cambridge 10MQ).
Episodic memory was assessed using measures of immediate and delayed story recall from the logical memory sub-test of the Weschler Memory Scale Third UK edition (WMS-III UK).
'Spot the Word' test for a measure of premorbid intelligence- this task was to determine letter strings and report if a real word or not. The team also used it as a measure of crystallised intelligence.
For Stage 2 (N=700), tasks included:
Emotion expression recognition
Hotel task
Sensorimotor task
Sentence comprehension
Face recognition: familiar and unfamiliar
Emotional reactivity and regulation*
Force matching*
Motor learning*
Picture-picture priming
Proverb comprehension
Tip-of-the-tongue
Visual short term memory task
Test of fluid intelligence: *Done in a subset (Participants assigned to Sessions 3a or 3b).
Stage 3 (N=280):
Imaging tasks (see 'Imaging' section).
IQ data available? No
NART No
IQ other (list) Intelligence was measured as fluid and crystallised, although IQ per se was not measured.
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
Repeated Collection
Comments: Stage 1 and 3 only.
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam Yes
Comments: Stage 1 (ACE-R).
3MS No
GPCOG No

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia No
Lewy Body Disease No
Huntingtons Disease No
Parkinsons Disease Yes
Frontotemporal dementia No
Vascular dementia No
MCI No
Subjective complaint Yes
Dementia diagnosis (Other comments) Participants in this general population study may have developed forms of dementia not specifically diagnosed in the study. MMSE scores were recorded but not used to make a clinical diagnosis.
Functional rating scales
Any information on dementia rating collected? Yes
ADCS-ADL No
ADCS-ADL-MCI No
Blessed Dementia Scale No
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 Excluded on the basis of MMSE at Stage 1 (less than 24).
ADL questions asked in depth in baseline interview.
Any information on subjective complaints collected? No
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) Yes
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 Activities of Daily Living questions in the Baseline interviews including social contact and interaction with others. The Lifetime of Experiences Questionnaire (self report) was adapted and used in Stage 1. http://rng.org.au/onlinetools/index.php?sid=41298
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
Health service utilisation
Any Health Resource Utilisation Collected ? Yes
Hospital utilisation No
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 No
Admission to home care No
Day care at nursing home No
Day care at home for elderly No
Home care- domestic No
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 No
Transient Ischemic Attack No
Carotid plaques No
Any head trauma data? Yes
Loss of consciousness Yes
Sports, soccer and boxing No
BISQ or equivalent No
EEG No
Psychiatric evaluations Yes
CESD scale (depression) No
Personality evaluation No
Apathy evaluation No
Anxiety measure Yes
Resilience evaluation No

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? Stored as NIFTI. MEG stored as .fif files.
Structural T1 Acquired
Acquired
N controls: 700, repeated in 280
Manufacturer: Siemens
Model: TIM Trio System, employing a 32 channel head coil
Scanner N: Single
Field strength: 3T
Fluid attenuation inversion recovery (FLAIR) Acquired
Acquired
N controls: 280
Manufacturer: Siemens
Model: TIM Trio System, employing a 32 channel head coil
Scanner N: Single
Field strength: 3T
Not acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired
N controls: 700, repeated in 280 for Stage 3.
Manufacturer: Siemens
Model: TIM Trio System, employing a 32 channel head coil
Scanner N: Single
Field strengths: 3T
f-MRI (task) Acquired
Acquired: Stage 2: Basic sensorimotor neural responses on a simple audio/visual sensorimotor task and movie watching. Stage 3: Participants were allocated to sessions/task sets and were required to complete one from Session 1 or 2, and one from Session 3 or 4, resulting in two sessions per participant. Session 1: Emotional expression and recognition, free selection, fluid intelligence, Stop Signal/Go-No Go. Session 2: Fluid intelligence, picture naming, sentence comprehension. Session 3: Emotional memory and encoding, emotional memory test. Session 4: Emotional reactivity and regulation, visual short-term memory.
N controls: 700 in Stage 2 and 280 in Stage 3, although the specific tasks were not repeated.
Manufacturer: Siemens
Model: TIM Trio System, employing a 32 channel head coil
Scanner N: Single
Field strength: 3T
f-MRI (rest) Acquired
Acquired
N controls: 700, repeated in 280 for Stage 3.
Manufacturer: Siemens
Model: TIM Trio System, employing a 32 channel head coil
Scanner N: Single
Field strength: 3T
PET Not acquired
Not acquired
SPECT Not acquired
Not acquired
MEG Acquired
Acquired: MEG was carried out at Stage 2 with resting state and basic sensorimotor neural responses on a simple audio/visual sensorimotor task. MEG cognitive tasks were also carried out in Stage 3, with participants assigned to one of two Stage 3 MEG sessions/task sets (Session 1 or Session 2). Stage 3 Session 1 MEG: Resting state, incidental memory, multi-mismatch, stop-signal/go-no go. Stage 3 Session 2 MEG: resting state, picture naming, sentence comprehension, word recognition.
N controls: (N= 700, resting state and basic sensorimotor task). (N=280).
Manufacturer: Elekta Neuromag, Helsinki
Model: 306-channel Vectorview system
Scanner N: Single
In vivo Spectroscopy Not acquired
Not acquired
Other (please specify) T2-weighted structural image.
Magnetisation Transfer Ratio (MTR) structural image.
Field maps.
Do you use an imaging data management system (e.g. XNAT or LORIS)? No
Primary contact for the technical aspects of the imaging data Datamanager@cam-can.com

Genetics

Variable Response
Overview
Gene screening

Biological samples

Variable Response
Blood collected No
Plasma No
Serum No
RNA No
DNA Yes
Comments: From saliva not from blood.
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
Details: Stage 2 only. Oragene kits. Stored and now moved to a processing site (NIHR Biorepository at Addenbrooke's). Extracted DNA from these and stored by NIHR Biorepository at Addenbrooke's http://www.cambridgebioresource.org.uk/
Cortisol No
Are laboratory protocols and saliva storage information available? No
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? No
Are information sheets made available to representative or consultees? No
Are retrospective interviews carried out after the participant's death? No
Is there a procedure for declining donation/failed recruitment/project termination? No
Has an actuarial analysis been completed? No

Lifestyle

Variable Response
Smoking Yes
Pack years Data available
Passive smoking 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
Drugs of abuse assessment
Drugs of abuse assessment - Data available? Data available
Comments: Drug Abuse Screening Test (DAST-20)
Obesity and associated risk factors
BMI Data available
Comments: Stage 2 and 3
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Other measurements of activity European Prospective Investigation into Cancer Study-Norfolk Physical Activity Questionnaire (EPIC-EPAQ2) was used.
Diet Yes
Carbs, protein, fats, fish oil Data available
Coffee and caffeine Data available
Food questionnaires Data available
Comments: Included in the interview: Frequency of vegetables (cooked and raw), fruit, fish, meats, dairy etc, changes to diet, diet variability, exclusions.
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Sleep assessment
Questionnaires Data available
Comments: Pittsburg Sleep Quality Index
Other sleep recording (specify) Asked specifically about shift work and also asked about sleep problems and patterns, including snoring and bad dreams.

Ethics and Engagement

Variable Response
Participant engagement
Ethics
Does the cohort include participants who lack capacity? No
Is there a process in place for participants who lose capacity? No
Do participants provide contact information for a person to act as a potential consultee? No
Disclosure
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? Individuals were randomly selected from the GP lists from participating surgeries in Cambridge City. Individuals were checked by the GP for eligibility of participation. All individuals received a letter informing them that an interviewer will contact them. Those who did not refuse at this stage were visited up to three times at different times of the day by a research interviewer to arrange an appointment.
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