Cohort Descriptives

Variable Response
Cohort name The Caerphilly Prospective Study
Cohort acronym CAPS
General Study Overview The Caerphilly Prospective Study (CAPS, also known as the Caerphilly Heart Disease Study), is an epidemiological population study set up to investigate relationships between lifestyle and other factors with incident vascular disease in men. At that time it was only the second population based study in the UK. Phase I began in 1979 until 1983, and Phase IV, the last time the men were examined, was undertaken between 1993 to 1997. Follow up has been carried up through linkage and postal questionnaires.
The initial aims of CAPS were to examine the importance of lipids, haemostatic factors, and hormones such as testosterone, cortisol and insulin in the development of heart disease. Other hypotheses were included with a specific interest in platelet function, and psychosocial variables. With the ageing of the cohort, additional outcomes have been included in particular stroke, hearing problems and cognitive function.
The CaPS data dictionary is available: https://www.maelstrom-research.org/mica/study/caps
Number of subjects at baseline 2,512 baseline (+ 447 added in Phase II = 2959)
Institution name University of Bristol
Department name School of Social and Community Medicine
City Bristol
Study or database website

https://www.maelstrom-research.org/mica/study/caps

Principal Investigator (PI): Name Prof Yoav Ben-Shlomo
PI: Address School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS
PI: email

Y.Ben-Shlomo@bristol.ac.uk

PI: phone 01179 287 206
Administrative Contact (AC): Name Prof Yoav Ben-Shlomo
AC: Address School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS
AC: email Y.Ben-Shlomo@bristol.ac.uk
AC: phone 01179 287 206
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? Combination
Does this take place in participants' homes or at a central location? Home
Central: Some follow up has been carried out via postal contact.
Do participants take part individually or are families/partners involved? Individually
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data Yes
Study start date 1979-07-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria 45-59 years old
Lives in Caerphilly region
Male
On electoral register and/or general practice list

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 Yes: Mortality flagged data
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Assessed before onset of dementia
Weight Data available
Assessed before onset of dementia
Comments: Also, birthweight
Height Data available
Assessed before onset of dementia
Anthropometry Data available
Comments: Skin folds
ECG Data available
Assessed before onset of dementia
Cardiovascular examination Data available
Assessed before onset of dementia
Respiratory examination Data available
Assessed before onset of dementia
PEFR Data available
Assessed before onset of dementia
Spirometry Data available
Assessed before onset of dementia
Opthalmic examination Data available
Assessed before onset of dementia
Specify any others LSHTM chest pain questionnaire and Health attitude inventory (HAI). Hearing: Audiometry at four freqencies, noise exposure and noise sensitivity at Phase II and at eight frequencies at Phase IV.
Doppler ultrasound carotid flow recording.
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Medication use for CVD Data available
Hypertension Data available
Systolic/diastolic BP Data available
Hypotension Data available
Hypercholesterolemia Yes
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
Reaction time Data available
Data available
N (estimate): 2205
List all tests: Four choice serial reaction time
Computerised
Language Data available
Data available
N (estimate): 2205
List all tests: Verbal fluency
IQ data available? Yes
NART Yes
IQ other (list) AH4 (fluid intelligence), from Phase III onwards
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
Repeated Collection
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition Cambridge Cognitive Examination (CAMCOG), CDR

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 Yes
MCI Yes
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.
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) Yes
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
Any information on subjective complaints collected? Yes
IQCODE Data available
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
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
Any information on Caregivers and Caregiving Collected? 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 No
Home care- nursing No
Physical therapist No
Care of community mental health team No
Permanent stay at nursing home Yes
Informal ADL care No
Informal iADL care No
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 Yes
Carotid plaques Yes
Any head trauma data? No
Sports, soccer and boxing No
BISQ or equivalent No
EEG No
Psychiatric evaluations Yes
CESD scale (depression) No
Personality evaluation Yes
Personality evaluation comments Comments: Neuroticism scales and Type A behaviour (Jenkins et al. questionnaires) in Phase II.
Apathy evaluation No
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

Genetics

Variable Response
Overview
Number Gwas subjects Controls N
Controls N: 1300
Controls % male: 100%
N Whole genome sequenced No
Gene screening
APOE No
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
Plasma Yes
Repeated Collection
Serum Yes
Repeated Collection
RNA No
DNA Yes
Repeated Collection
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 Yes
Repeated Collection
HbA1c Yes
Repeated Collection
Lipids Yes
Repeated Collection
Liver Function Tests Yes
Repeated Collection
Serum creatinine Yes
Repeated Collection
Homocysteine Yes
Repeated Collection
Folate Yes
Other blood samples Yes
Are laboratory protocols and storage information available for bloods No
Urine collection
Urine No
Autopsy data
Autopsy No
Saliva
Saliva collected No
Cortisol Yes
Repeated Collection
Details: Bloods
CSF
CSF collected No
Are CSF laboratory protocols and storage information available? No
mtDNA abnormalities No
Oxidative stress Yes
Details: Antioxidant enzymes tested for in fasting blood
synuclein No

Brain donation

Variable Response

Lifestyle

Variable Response
Smoking Yes
Current smoking Data available
Former smoking Data available
Alcohol Data available
Specified beverage type (wine, spirits, beers) Data available
Abstainers/former users Data available
Alcohol Use Disorders Identification Test (AUDIT) or other screen instrument (name) Data available
Comments: CAGE Questionnaire
Binge drinking Data available
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Hip/waist circumference Data available
Fat percentage Data available
Dyslipidemia Data available
Blood lipids Data available
Metabolic syndrome Data available
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Exercise duration Data available
Other measurements of activity Leisure time physical activity questionnaire
Diet Yes
Carbs, protein, fats, fish oil Data available
Anti-oxidants Data available
Comments: Antioxidant enzymes measured in fasted blood
Vegetarian? Data available
Shortage of food Data available
Coffee and caffeine Data available
Vitamin A, B, E Data available
Fat intake MUFA, PUFA Data available
Food questionnaires Data available
Comments: 7-day weighed inventory on a 30% sub sample in Phase I.
Other dietary items Food Frequency Questionnaire items
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: Wisconsin Sleep Questionnaire (with help from their partners)

Ethics and Engagement

Variable Response
Participant engagement
Ethics
Disclosure
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? Participants were identified from the electoral register and general practice lists.
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? Wales
Wales