Cohort Descriptives

Variable Response
Cohort name Environmental pollution-induced Neurological Effects (EPINEF) study
Cohort acronym EPINEF
Number of subjects at baseline 2008 (1st-3rd year) , and recruting is ongoing.
Institution name Yonsei University College of Medicine
Department name Preventive medicine department
City Seoul , Korea
Principal Investigator (PI): Name Changsoo Kim
PI: Address Yonsei University College of Medicine, Shinchon dong 143, Seodaemun Gu, Seoul, Korea
PI: email

PREMAN@yuhs.ac

PI: phone 82-2-2228-1860
Administrative Contact (AC): Name Juhwan Noh
AC: Address Yonsei University College of Medicine, Shinchon dong 143, Seodaemun Gu, Seoul, Korea
AC: email NJUHWAN@yuhs.ac
AC: phone 82-2-2227-3495
Technical Contact/Data manager (TC): Name Seong Kyung Cho
TC: Address Yonsei University College of Medicine, Shinchon dong 143, Seodaemun Gu, Seoul, Korea
TC: email

tjdrudzo@hucoss.or.kr

TC: phone 82-2-2227-8292
Population based study? Yes
Family based study? No
Clinical based sample? Yes
Is there follow-up data available? Yes
Were participants included prior to development of dementia (may refer to controls only)? No
Were participants included prior to development of MCI (may refer to controls only)? No
How is data collected? In person
Who carries out data collection? Interviewers
Clinical staff: Researchers including researching nurse, student researcher
Does this take place in participants' homes or at a central location? Central
Do participants take part individually or are families/partners involved? Individually
Family: Mainly individually. Some participants take part with their partner.
Dementia cases ascertained as part of study: Yes
Diagnosis based on review of existing clinical data Yes
Was diagnosis/primary outcomes made blind to exposure variables? Yes
How many times followed up? 2
How regular is follow-up? Every 3 years
Study start date 01/05/2014
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Community dwelling people living in specific area. Over 60 years.
Exclusion criteria Past history of dementia, parkinsonism, stroke

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 No
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Weight Data available
Height Data available
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
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
IQ data available? No
NART No
IQ other (list) No
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
MMSE Yes
MoCA Yes
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition None

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 No
Dementia diagnosis (Other comments) Yes
Functional rating scales
Any information on dementia rating collected? Yes
ADCS-ADL No
ADCS-ADL-MCI No
Clinical dementia rating scale (CDR) No
Complex Activities of Daily Living No
Dependence Scale 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 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) Yes
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
Specify any other scales 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 Yes
Short Form (SF) 36 No
Health Utilities Index 1, 2 or 3 No
Specify any other quality of life scales No
Any information on Caregivers and Caregiving Collected? No
Health service utilisation
Any Health Resource Utilisation Collected ? No
Hospital utilisation No
Costs of Visits to Specialists (out-patient) No
Other neurological or psychiatric measurements? No

Imaging

Variable Response
Structural T1 Acquired
Acquired
Fluid attenuation inversion recovery (FLAIR) Acquired
Acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired
f-MRI (task) Acquired
Acquired
f-MRI (rest) Acquired
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
Number Gwas subjects None
N imputed subjects None
N Exome Chip subjects None
N Whole Exome sequenced None
N Whole genome sequenced No
N samples not sequenced or genotyped No
N APOE genotyped No
N not APOE genotyped No
Gene screening
APOE Subgroup: Partially (One subcohort do APOE4 screening)
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
Serum Yes
RNA No
DNA No
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
CRP (c-reactive protein) Yes
eGFR (estimated Glomular Filtration Rate) Yes
Glucose Yes
HbA1c Yes
Lipids Yes
Liver Function Tests Yes
Serum creatinine Yes
Homocysteine No
Folate No
Other blood samples Yes
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Urine Yes
Autopsy data
Autopsy No
Saliva
Saliva collected No
Cortisol No
Are laboratory protocols and saliva storage information available? No
CSF
CSF collected No
CSF Abeta No
CSF tau No
No
Are CSF laboratory protocols and storage information available? No
Mitochondrial function Comments
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
Current smoking Data available
Former smoking Data available
Alcohol Data available
Units per day/week vs weekend Data available
Abstainers/former users Data available
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Blood lipids Data available
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Exercise duration Data available
Occupation possible job matrices Data available
Diet No
Employment status
Employment status Data available
Living situation
Socioeconomic status
Socioeconomic status measures Data available: Income
Sleep assessment
Questionnaires Data available
Actigraphy to measure sleep patterns Data available
Other sleep recording (specify) Yes

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? Yes.
If so, does this happen on an ongoing or an ad hoc basis? Ongoing basis.
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? No.
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? Yes
Disclosure
Do procedures exist for the disclosure of incidental findings? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Imaging(MRI), critical value in CBC, BUN/Cr, AST/ALT and other blood tests.
Who is responsible for disclosing incidental findings? PI.
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
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? Critical value in blood test or imaging test.

Data Management

Variable Response
Consent for linkage to routine data