Cohort Descriptives

Variable Response
Cohort name The English Longitudinal Study of Ageing
Cohort acronym ELSA
General Study Overview The primary objective of the English Longitudinal Study of Ageing (ELSA) is to collect longitudinal multidisciplinary data from a representative sample of the English population aged 50 to 100 at recruitment. ELSA was developed as a companion study to the Health and Retirement Study (HRS) in the USA and documents the experience of growing old in England in the 21st century.
The study collects both objective and subjective data relating to health and disability, biological markers of disease, economic circumstance, social participation, networks and well-being. There have been seven sweeps of data collection 2002-03, 2004-05, 2006-07, 2008-09, 2010-11, 2012-2014 and a further eighth sweep is underway. A substudy of dementia has been planned for 2017 and will include 1000 participants.
Number of subjects at baseline Sample size at recruitment: 12,099 (12,099 consisted of 11,391 core members, 636 partners aged <50 years and 72 new partners aged ≥50 years). Estimated current sample size: 10,317.
Institution name University College London
Department name Dept. of Epidemiology & Public Health
City London
Study or database website

http://www.elsa-project.ac.uk/

Principal Investigator (PI): Name Professor Andrew Steptoe
PI: Address Dept. of Epidemiology & Public Health, University College London, 1-19 Torrington Place, London, WC1E 6BT
PI: email

a.steptoe@ucl.ac.uk

PI: phone 0207 679 1804
Administrative Contact (AC): Name Dr Dorina Cadar
AC: Address Department of Behavioural Science and Health University College London, Room 355a, 1-19 Torrington Place London, WC1E 6BT
AC: email D.cadar@ucl.ac.uk
AC: phone 02076795969
Technical Contact/Data manager (TC): Name Dr Nina Rogers
TC: Address ELSA Project Manager, Dept. of Epidemiology & Public Health, University College London, 1-19 Torrington Place, London, WC1E 6BT
TC: email

n.rogers@ucl.ac.uk

TC: phone 020 7679 1656
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
Clinical staff: Nurses for clinical visits.
Does this take place in participants' homes or at a central location? Home
Do participants take part individually or are families/partners involved? Individually
Dementia cases ascertained as part of study: No
Diagnosis based on review of existing clinical data No
Was diagnosis/primary outcomes made blind to exposure variables? No
How many times followed up? 7
Study start date 2002-01-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria Membership of a participating household from HSE in which at least one person had agreed to follow-up.
Age 50 years or older.
Living in a private household in England at the time of the first wave of fieldwork.

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: Through data linkage
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Assessed before onset of dementia
Comments: Also asked if blood pressure checked within last year (Waves 1 and 2: people 65+ only, subsequent waves, all participants)
Weight Data available
Assessed before onset of dementia
Comments: Waves 0, 2, 4, 6
Height Data available
Assessed before onset of dementia
Comments: Waves 0, 2, 4, 6
Respiratory examination Data available
Assessed before onset of dementia
Comments: Respiratory questionnaire, Edinburgh claudication questionnaires
Spirometry Data available
Assessed before onset of dementia
Gait assessment Data available
Assessed before onset of dementia
Comments: Timed walk assessment. Balance also assessed.
Opthalmic examination Data available
Assessed before onset of dementia
Comments: Self-rated
Specify any others Self-rated general health, self - rated mobility, eyesight and hearing, Dental health (Waves 3,5), Physician diagnosed conditions, Falls in those aged 60+, Pain, Diagnostic symptom assessments: Rose Angina, MRC, Menopause.
Grip strength at Waves 2, 4, 6. Leg raise at Waves 2, 4, 6. Chair stands at Waves 2, 4, 6.
Hearing test at Wave 7.
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Medication use for CVD Data available
Systolic/diastolic BP Data available
Hypercholesterolemia Yes
Virus testing No data available
Olfactory sensitivity Yes
Medication use Yes
Drug coding system: http://www.elsa-project.ac.uk/uploads/elsa/docs_w6/Coding%20Prescribed%20Medicines.pdf
Cancer Data available
Comments: Cancer screening participation at Waves 5 and 6 (and 7, age limited).
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Verbal Memory Data available
Data available
N (estimate): 12,099
Comments
List all tests: Immediate and delayed verbal memory was assessed by presenting a list of 10 nouns aurally on a computer, one every 2 s. Participants were asked to recall as many words as possible immediately and again after a short delay during which they carried out the other cognitive tests.
Computerised
Language Data available
Data available
N (estimate): 12,099
Comments: Waves 1-6
List all tests: Literacy tests added in Wave 2. Verbal (semantic) fluency was assessed by asking participants to name as many animals as they could think of in 1 min.
Pen and paper
Vigilance Data available
Data available
N (estimate): 12,099
List all tests: Letter cancellation (Executive Function): Participants were given a clipboard to which was attached a page of 780 random letters of the alphabet set out in a grid of 26 rows and 30 columns and were asked to cross out as many target letters (P and W) as possible in 1 min
Latent memory Data available
Data available
List all tests: Delayed recall
Other cognitive tasks Prospective memory: Prospective memory (also called ‘‘remembering to remember’’) was assessed by asking participants to remember to carry out a prior instruction at a
specified point later in the session (writing their initials in the top left-hand corner of a page attached to a clipboard when it is handed to them). This prospective memory test is closely based on a task incorporated in CFAS.
Wave 7 additions: Serial 7s, backwards counting from 20.
Numerical ability was assessed in Wave 1 and 4 (and 6 and 7 for those who hadn't completed it).
Self-rated memory was assessed in Waves 1, 2, 3, 4 and 7.
IQ data available? Yes
NART No
IQ other (list) Fluid intelligence (adaptive number series) in Wave 6.
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education Yes
Standard dementia global cognition scales? Yes
MMSE Yes
Comments: Parts thereof, including time orientation.
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition Quality of cognitive interview (interviewer's assessment).
Proxy interview of cognitive functioning from Wave 2 onwards (IQCODE scale).

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia Yes
Lewy Body Disease Yes
Huntingtons Disease Yes
Parkinsons Disease Yes
Frontotemporal dementia Yes
Vascular dementia Yes
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 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
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) Yes
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
Specify any other quality of life scales Quality of life (CASP-19), Satisfaction With Life Scale (Waves 2 onwards), Ryff well-being scales (Waves 2, subsample), Positive affect (Waves 5 onwards), Subjective social status, Relative deprivation and perceived financial difficulties (Waves 2 onward), Age at which middle age ends and old age begins (Waves 1,3), Self-perceived and desired ages (Waves 2,4), Experience and perceptions of ageing (Wave 4). Questions also asked about Social and Civic Participation including Social isolation/loneliness (Waves 2 onwards).
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 Yes
Prescription Medicine Cost No
Over the Counter Drug Costs No
Nursing Home Costs Yes
Costs of Visits to Specialists (out-patient) No
Costs of Home-Care No
Admission to nursing home Yes
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 Yes
Informal iADL care Yes
Days of work absence if having a paid job Yes
Other neurological or psychiatric measurements? Yes
Any stroke data? Yes
Stroke type Yes
Transient Ischemic Attack Yes
Carotid plaques No
Any head trauma data? Yes
Loss of consciousness No
Sports, soccer and boxing No
Head trauma severity No
BISQ or equivalent No
Psychiatric evaluations Yes
CESD scale (depression) Yes
Personality evaluation Yes
Personality evaluation comments Yes
Comments: Wave 5
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

Genetics

Variable Response
Overview
Number Gwas subjects Controls N
Controls N: 8,000 approx
Comments: A genome wide microarray assay (GWAS study) was carried out in 2013/14 with funding from the ESRC. This involved genotyping of around 8,000 ELSA participants with the Illumina Omni 2.5-8 chip. This provides information on 2.5 million single nucleotide polymorphisms (SNPs), which is expanded to over 4 million SNPs by imputation. The same chip has been used in the HRS, allowing for direct comparisons. The ELSA GWAS has been deposited in the European Genome-phenome Archive (EGA).
Gwas platform Illumina: Illumina Omni 2.5-8 chip
N imputed subjects Controls N
Controls N: 8,000
N Whole Exome sequenced Controls N
Controls N: 8,000
Exome/Genome sequencing broad platform categories Illumina
N Whole genome sequenced Yes
Genome sequencing broad platform categories Illumina
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
Comments: Collected at Wave 2
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
CRP (c-reactive protein) Yes
Repeated Collection
Comments: Waves 0, 2, 4, 6
eGFR (estimated Glomular Filtration Rate) No
Glucose Yes
Repeated Collection
Comments: Waves 2, 4, 6
HbA1c Yes
Lipids Yes
Repeated Collection
Comments: Waves 2, 4, 6
Liver Function Tests No
Serum creatinine No
Homocysteine No
Folate No
Other blood samples Yes
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Urine No
Autopsy data
Saliva
Saliva collected Yes
Repeated Collection
Details: Waves 2 and 4
Cortisol Yes
Repeated Collection
Details: Waves 2 and 4
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? No
Are information sheets made available to representative or consultees? No
Are retrospective interviews carried out after the participant's death? Yes
Is there a procedure for declining donation/failed recruitment/project termination? No
Has an actuarial analysis been completed? Yes

Lifestyle

Variable Response
Smoking Yes
Current smoking Data available
Comments: Including ecigarettes from Wave 7
Former smoking Data available
Comments: Including smoking history and quality of care for cessation
Alcohol Data available
Units per day/week vs weekend Data available
Comments: Heaviest consumption day last week and usual frequency.
Abstainers/former users Data available
Binge drinking Data available
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Hip/waist circumference Data available
Comments: Waves 0, 2, 4, 6
Dyslipidemia Data available
Blood lipids Data available
Type of exercise: heavy, light Data available
Comments: Including frequency and if job sedentary or active.
Exercise duration Data available
Occupation possible job matrices Data available
Objective measures of activity Data available
Diet Yes
Food questionnaires Data available
Comments: Consumption of fruit and vegetables.
Other dietary items Yes
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Comments: Very detailed interviews and questionnaire sets as well as linked data.
Sleep assessment
Questionnaires Data available
Comments: Sleep disturbance and sleep duration measured during the computer assisted personal interview (CAPI) in 6465 men and women from Waves 4 and 6.
Actigraphy to measure sleep patterns Data available

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? No
If so, does this happen on an ongoing or an ad hoc basis? NA
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? No
If yes, who is represented on it? NA
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
Do procedures exist for the disclosure of incidental findings? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Clinical tests such as blood pressure.
Who is responsible for disclosing incidental findings? The study doctor will send a letter to the participant, and will inform the GP (with participant consent).
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)? The sample was drawn from participants in the Health Survey for England (HSE), an annual cross-sectional survey that is designed to monitor the health of the general population.
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? Yes
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