Cohort Descriptives

Variable Response
Cohort name Samsung Medical Center Amyloid PET Cohort
Cohort acronym SMC Amyloid PET
General Study Overview To verify the predictive effect of amyloid-pathology (amyloid-PET imaging) and biomarkers from the subjects who had been followed up for more than 5 years
Number of subjects at baseline 120
Institution name SAMSUNG MEDICAL CENTER
Department name Department of Neurology
City Seoul , Korea
Principal Investigator (PI): Name Sang Won Seo
PI: Address Sungkyunkwan University School of Medicine, Samsung Medical Center, 50 Ilwon-dong, Kangnam-ku, Seoul 135-710, Republic of Korea
PI: email

sangwonseo@empal.com

PI: phone 82-2-3410-1233
Administrative Contact (AC): Name Soo Hyun Cho
AC: Address Sungkyunkwan University School of Medicine, Samsung Medical Center, 50 Ilwon-dong, Kangnam-ku, Seoul 135-710, Republic of Korea
AC: email K906141h@hanmail.net
AC: phone 82-2-3410-1233
Technical Contact/Data manager (TC): Name Ji Su Ho
TC: Address Sungkyunkwan University School of Medicine, Samsung Medical Center, 50 Ilwon-dong, Kangnam-ku, Seoul 135-710, Republic of Korea
TC: email

njisu1234@gmail.com

TC: phone 82-2-3410-1233
Population based study? Yes
Family based study? No
Clinical based sample? Yes
Is there follow-up data available? No
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: Data is collected at Dementia Centre in Samsung Medical Centre
Who carries out data collection? Interviewers
Clinicians: Researchers including Researching Doctor and Researcher
Does this take place in participants' homes or at a central location? Central: Samsung Medical Centre
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
Was diagnosis/primary outcomes made blind to exposure variables? Yes
How many times followed up? 1
How regular is follow-up? Within 1 year
Study start date 15/01/2016
Is study ongoing? No
Is study still recruiting? No
Inclusion criteria CN (Community dwelling people ), SMI,MCI and AD (SMC clinic patients)

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
Neurological examination Comments: Not available
Extrapyramidal symptoms Comments: Not available
Heart Rate Data available
ECG Comments: Not available
Gait assessment Comments: Not available
Opthalmic examination Comments: Not available
Visual fields (direct/indirect) Comments: Not available
Colour vision Comments: Not available
Nerve conduction Comments: Not available
Specify any others None
Medical conditions

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available
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) None
Cognitive background? Yes
Years of education Yes
Level of education No
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA No
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 Yes
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) Yes
Complex Activities of Daily Living No
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 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
Any Quality of Life Data Colllected? 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
Do you use an imaging data management system (e.g. XNAT or LORIS)? No

Genetics

Variable Response
Overview
Number Gwas subjects No
N imputed subjects No
N Exome Chip subjects No
N Whole Exome sequenced No
N Whole genome sequenced No
Genome sequencing broad platform categories No
N APOE genotyped 120
Gene screening
APOE Yes
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
GSN No
ITM2B No
HTT No
NPC1 No
NPC2 No

Biological samples

Variable Response
Blood collected Yes
Plasma Yes
Serum Yes
RNA No
DNA Yes
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
HbA1c No
Lipids Yes
Liver Function Tests Yes
Serum creatinine Yes
Homocysteine No
Folate No
Other blood samples No
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Urine No
Autopsy data
Autopsy No
Measurements already performed No
Saliva
Saliva collected No
Cortisol No
Are laboratory protocols and saliva storage information available? No
CSF
CSF collected No
CSF Abeta No
Are CSF laboratory protocols and storage information available? No
Mitochondrial function Comments
mtDNA abnormalities No
Oxidative stress No
synuclein 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
Drugs of abuse assessment
Obesity and associated risk factors
Blood lipids Data available
Physical activity and exercise No
Diet No
Employment status
Living situation
Socioeconomic status
Sleep assessment

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
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? No

Data Management

Variable Response
Consent for linkage to routine data