Cohort Descriptives

Variable Response
Cohort name Genetic and Environmental Risk in Alzheimer’s Disease (GERAD) Consortium
Cohort acronym GERAD
Number of subjects at baseline 10,000+
Institution name Cardiff University
City Cardiff
Principal Investigator (PI): Name Prof. Julie Williams and colaborators
PI: email

williamsJ@cardiff.ac.uk

Administrative Contact (AC): Name AD Research Office
AC: email ADresearchoffice@cardiff.ac.uk
Technical Contact/Data manager (TC): Name Alun Meggy
TC: email

ADresearch@cardiff.ac.uk

TC: phone 02920 688042
Population based study? Yes
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
Who carries out data collection? Clinicians: Researchers and clinicians
Does this take place in participants' homes or at a central location? Home
Central: Both
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data Yes

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia Yes: Some. We hold age at onset rather than age at diagnosis.
Age at last follow-up No: However, this can be calculated.
Age at time of death No
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available: Some
Weight Data available: Some
Height Data available: Some
Neurological examination Data available: Some
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Medication use for CVD Data available
Hypertension Data available
Systolic/diastolic BP Data available: Some
Hypercholesterolemia No
Virus testing Data collected: Some
Olfactory sensitivity No
Medication use Yes
Cancer Data available
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Verbal Memory Data available
Data available
Language Data available
Data available
Vigilance Data available
Data available
Latent memory Data available
Data available
Other cognitive tasks Visuospatial
IQ data available? Yes
NART Yes
IQ other (list) None
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA Yes
Comments: Some
ADAS-Cog Yes
Comments: Some
Addenbrooke's Cognitive Exam Yes
Comments: Some
3MS No
GPCOG No
Other assessments of global cognition Some TICs, some DRS-2

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia Yes
Lewy Body Disease Yes
Huntingtons Disease No
Parkinsons Disease Yes
Frontotemporal dementia Yes
Vascular dementia Yes
MCI Yes
Subjective complaint No
Functional rating scales
Any information on dementia rating collected? Yes
ADCS-ADL Yes
ADCS-ADL-MCI No
Blessed Dementia Scale Yes
Clinical dementia rating scale (CDR) Yes
Dependence Scale No
Functional Assessment Questionniare (FAQ) No
FAST No
Global Deterioration Scale (GDS) Yes
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) No
Connor-Davidson Resilience Scale No
Cornell depression Scale Yes
Geriatric Depression Scale (GDS) Yes
Hamilton depression rating scale (HDRS) No
Montgomery-Asberg depression scale (MADRS) No
NPI Yes
NPI-Q No
Hospital anxiety depression scale/psychiatry (HADS) No
Specify any other scales No
Any Quality of Life Data Colllected? No
Any information on Caregivers and Caregiving Collected? No
Health service utilisation
Any Health Resource Utilisation Collected ? Yes
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 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 No
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 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 No
Apathy evaluation Yes
Anxiety measure Yes
Resilience evaluation No

Imaging

Variable Response

Genetics

Variable Response
Overview
Number Gwas subjects 3177 cases and 7277 controls
Gwas platform Various
N imputed subjects Almost all
N Whole Exome sequenced Almost all
N Whole genome sequenced No
N APOE genotyped Almost all
Gene screening
APOE Yes
TREM2 Yes: Some

Biological samples

Variable Response
Blood Metabolic Analytes
CRP (c-reactive protein) Yes
Glucose Yes
HbA1c Yes
Lipids Yes
Urine collection
Urine Yes
Autopsy data
Saliva
CSF

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? No
Is there a procedure for declining donation/failed recruitment/project termination? Yes
Has an actuarial analysis been completed? Yes

Lifestyle

Variable Response
Smoking Yes
Current smoking Data available
Former smoking Data available
Alcohol Data available
Abstainers/former users Data available
Binge drinking Data available
Drugs of abuse assessment
Obesity and associated risk factors
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Sleep assessment

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? Not currently
Do existing mechanisms for consulting/involving participants exist? Not currently
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? Not currently
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? No
Disclosure
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? NHS Primary and Secondary care
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? No
Consent and recontact
Is there consent for recontact? Yes
If so, under what conditions? Optional section on consent form

Data Management

Variable Response
Consent for linkage to routine data