Cohort Descriptives

Variable Response
Cohort name The University of Hong Kong Neurocognitive Disorder Cohort
Cohort acronym HKUNCDC
General Study Overview The HKU Neurocognitive Disorder (NCD) Cohort is a hospital-based, prospective, observational study of older HK Chinese adults with cognitive impairment, with a special focus on those with subjective cognitive decline and mild cognitive impairment. Comprehensive profiling of each subject is performed through a multi-domain assessment protocol including detailed demographics, lifestyle factors, neuropsychological battery, mood, MRI, genetics, blood biomarkers, and other patient-centred parameters including level of disability, quality of life and societal engagement. Ongoing annual follow up captures the essential clinical events and changes in neurocognitive function (conversion to MCI or dementia), mood, level of disability and quality of life, as well as repeat blood tests. The HKU NCD Cohort is the first-ever Asian dementia cohort to be formally included into the Dementia Platforms UK, achieving an international collaborative status with other UK-based cohorts. The study neuropsychological battery is aligned with the NACC UDS3 battery.
Number of subjects at baseline Ongoing recruitment
Institution name The University of Hong Kong
Department name Department of Medicine
City Hong Kong
Principal Investigator (PI): Name Dr Joseph SK Kwan
PI: Address K422, Queen Mary Hospital, 102 Pok Fu Lam Road, HK
PI: email

jskkwan@hku.hk

PI: phone +85222554769
Administrative Contact (AC): Name Dr Joseph SK Kwan
AC: Address K422, Queen Mary Hospital, 102 Pok Fu Lam Road, HK
AC: email Jskkwan@hku.hk
AC: phone +85222554769
Technical Contact/Data manager (TC): Name Charlene Cheng
TC: Address Rm 203, Houseman Quarter, Queen Mary Hospital, 102 Pok Fu Lam Road, HK
TC: email

cychar@hku.hk

TC: phone +85222554769
Population based study? No
Family based study? No
Clinical based sample? Yes
Is there follow-up data available? Yes
Were participants included prior to development of MCI (may refer to controls only)? Yes
How is data collected? In person: Patients are recruited from the Memory Clinic and General Geriatrics Specialist Outpatient Clinic in Queen Mary Hospital. Clinical diagnosis is made by the PI and Senior Physician. Upon receiving informed consent, the participant underwent baseline face-to-face assessments by the research assistants, and blood test.
Who carries out data collection? Clinicians
Clinical staff: Trained research assistants
Does this take place in participants' homes or at a central location? Central: Queen Mary Hospital, HKU, HK
Do participants take part individually or are families/partners involved? Family: Families/partners involved
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? No
How regular is follow-up? Annual
Study start date 01/09/2014
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Older adults with or without neurocognitive disoder. HKU NCD Cohort focuses primarily on people with Subjective Cognitive Decline (SCD) and Mild Cognitive Impairment (MCI).
Exclusion criteria Severe Parkinson's disease, major depressive disorder or severe psychiatric conditions, significant communication difficulties (e.g. aphasia, deafness), terminal cancer or likely end-of-life in the next 12 months.

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 Data available
Extrapyramidal symptoms Data available
Heart Rate Data available
Gait assessment Data available
Specify any others Waist circumference, hand grip strength, walking speed, frailty status (FRAIL scale)
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Medication use for CVD Data available
Hypertension Data available
Systolic/diastolic BP 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
Other cognitive tasks Benson's complex figure copy and recall
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: Remark: HK-MOCA
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition Abbreviated Mental Test (AMT, Chinese)

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
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) Yes
Comments: FAQ at yearly follow-up only (none at baseline), Barthel Index (20-point)
FAST Yes
Global Deterioration Scale (GDS) No
Katz ADL No
Lawton IADL Yes
Comments: Lawton IADL max 8 points
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
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
NPI Yes
NPI-Q Yes
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) Yes
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? 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) Yes
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 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 Yes
Transient Ischemic Attack Yes
Carotid plaques No
Any head trauma data? Yes
Loss of consciousness Yes
Sports, soccer and boxing No
Head trauma severity Yes
BISQ or equivalent No
EEG No
Psychiatric evaluations No

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? DVD
Structural T1 Acquired
Acquired
Fluid attenuation inversion recovery (FLAIR) Acquired
Acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired
f-MRI (rest) Acquired
Acquired
PET Acquired
Acquired
In vivo Spectroscopy Acquired
Acquired
Other (please specify) ASL
Do you use an imaging data management system (e.g. XNAT or LORIS)? No
Primary contact for the technical aspects of the imaging data Dr Henry Mak, Department of Diagnostic Radiography, HKU, Hong Kong (makkf@hku.hk)
Retinal imaging Data available
Comments: Ocular CT (Selected patients)

Genetics

Variable Response
Overview
Number Gwas subjects 0
Gene screening

Biological samples

Variable Response
Blood collected Yes
Plasma Yes
Serum Yes
RNA Comments: Blood taken, not yet analysed
DNA Comments: Blood taken, not yet analysed
Abeta 1-40 Comments: Blood taken, not yet analysed
Abeta 1-42 Comments: Blood taken, not yet analysed
Abeta x-40 Comments: Blood taken, not yet analysed
Abeta x-42 Comments: Blood taken, not yet analysed
Blood Metabolic Analytes
CRP (c-reactive protein) No
eGFR (estimated Glomular Filtration Rate) Yes
Glucose Yes
HbA1c Yes
Lipids Yes
Liver Function Tests No
Serum creatinine Yes
Homocysteine No
Folate Yes
Other blood samples Yes
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Urine No
Autopsy data
Autopsy No
Saliva
Saliva collected No
Cortisol No
CSF
CSF collected No
CSF Abeta No
CSF tau No
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
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Hip/waist circumference Data available
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Exercise duration Data available
Other dietary items Mini Nutrition Assessment (MNA) Short Form
Employment status
Employment status Data available
Comments: main occupation pre-retirement
Living situation
Living situation Data available
Socioeconomic status
Sleep assessment
Questionnaires Data available
Comments: from Sept 2017, Insomnia Severity Index (Chinese)

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) All clinical findings
Who is responsible for disclosing incidental findings? Principal Investigator
Do procedures exist for the disclosure of clinically relevant information identified as a direct focus of the study? (e.g. a diagnosis of dementia) Yes
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? Specialist Memory Clinic and General Geriatrics Clinic, Queen Mary Hospital, HK
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? At every clinical follow-up by senior physician

Data Management

Variable Response
Consent for linkage to routine data