Cohort Descriptives

Variable Response
Cohort name Northern Ireland Cohort for the Longitudinal study of Ageing
Cohort acronym NICOLA
General Study Overview NICOLA is a public health study involving men and women aged 50 years and over living in Northern Ireland who will voluntarily be followed over a number of years. Households were identified that had people aged 50 and over living in them, a sample representative of the population of Northern Ireland was drawn from this and then the employed market research company sought the participation from appropriate members within those selected households.
The study, set up by the Centre for Public Health in Queen’s University Belfast aims to provide information on the health, social and economic circumstances of ~8500 men and women as they grow older in Northern Ireland and how their circumstances may change over those coming years.
The primary objective is to collect longitudinal data on physical and mental health, well-being,disability, economic circumstances, social participation and connectedness as people plan for, move into and progress beyond retirement. Information is obtained through a fieldwork survey utilising a CAPI (Computer Assisted Personal Interview) and a Self Completion Questionnaire which the participant completes in their own time. These interviews will take place approximately every 2-3 years. The interviewers collect information on living arrangements, children, education, income and assets, physical and mental health, employment, lifelong learning, planning for retirement, care and social support. Questions will be asked about health, diet, work, family and social networks, income and benefit receipts, quality of life, cognitive functioning, daily activities, housing, retirement and pensions. The affect of 'the troubles' on the lives of people will also be explored. A physical health assessment is also planned for alternative waves (wave 1, wave 3, wave 5 etc.) covering cognitive measures, blood pressure, grip strength, anthropometric measurements, gait and balance, respiratory, bodystat, blood/urine samples and an ophthalmic component. Information gathered during this study will be used to inform and plan Northern Ireland Health and Social Care provision in the future, and to design other policies targeted towards older people.
NICOLA will address longer term research goals to investigate the determinants of retirement behaviour and economic wellbeing, the impact of cognitive function and sensory disability on decision making, the determinants of disability trajectories, the influence of social participation on these and the interaction of genetic, biological and psychosocial determinants on health and mortality. At present there are no other studies in Northern Ireland that will look at such an array of topics that provide a fuller understanding of the ageing process.
Number of subjects at baseline 8504 (8309 greater than or equal to 50years old, 195 less than 50 years old)
Institution name Queens University Belfast
Department name Centre for Public Health
City Belfast
Study or database website

http://nicola.qub.ac.uk

Principal Investigator (PI): Name Prof Frank Kee (NICOLA Scientific Director)
PI: Address Centre for Public Health, Queens University Belfast, Institute of Clinical Sciences Block A, Grosvenor Road, Belfast BT12 6BJ
PI: email

f.kee@qub.ac.uk

Administrative Contact (AC): Name Amanda Coulter
AC: Address Centre for Public Health, Queens University Belfast, Institute of Clinical Sciences Block B, Grosvenor Road, Belfast BT12 6BJ
AC: email A.coulter@qub.ac.uk
AC: phone 028 90978923 / 07788320299
Technical Contact/Data manager (TC): Name Angie Scott
TC: Address Centre for Public Health, Queens University Belfast, Institute of Clinical Sciences Block B, Grosvenor Road, Belfast BT12 6BJ
TC: email

angela.scott@qub.ac.uk

TC: phone 02890978930
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? Combination: Survey and Health Assessment
Who carries out data collection? Interviewers
Clinical staff: External Market Research Company (CAPI) and NICOLA trained nurses and research assistants (Health Assessment)
Does this take place in participants' homes or at a central location? Home
Central: Interviews (CAPI) take place in participant home, Health Assessment is predominantly based in Research Facility within hospital. However, some have also taken place in participant homes
Do participants take part individually or are families/partners involved? Family: All eligible within the same household were invited to take part in Wave 1. (eligible = partner of someone over 50years old, or other household member over 50 years old) Partners of eligible age (over 50) are invited in follow up waves.
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? Unknown
How regular is follow-up? Approx every 2 years
Study start date 20/01/2013
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Participants were recruited from a sample representative of the population of Northern Ireland. Eligibility was based on the fact they needed to be aged 50 or over.
Exclusion criteria Member of households who are younger than 50 years are excluded unless they are a spouse or Partner of an eligible NICOLA participant

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
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Blood pressure Data available
Weight Data available
Height Data available
Gait assessment Data available
Opthalmic examination Data available
Visual fields (direct/indirect) Data available
Colour vision Data available
Specify any others Grip strength, respiratory, bodystat
Medical conditions
Cardiovascular disease data Yes: Self reported
Myocardial infarction Data available: Self reported
Medication use for CVD Data available: Self reported
Hypertension Data available: Self reported
Systolic/diastolic BP Data available
Comments: Collected at Health Assessment
Hypotension Comments: Blood pressure captured at Health Assessment
Hypercholesterolemia Yes: Self reported and lipid analysis from blood sample
Medication use Yes: Self reported
Cancer Data available: Self reported
Diabetic Status Data available: Self reported both in CAPI and Health Assessment

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Verbal Memory Data available
Data available
Other cognitive tasks Yes
IQ data available? No
NART No
IQ other (list) No
Cognitive background? No
Level of education Yes
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA Yes
No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No
Other assessments of global cognition Colour Trails 2, animal recall, self rated memory

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
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 Yes
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) Yes
Health service utilisation

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? Microsoft SQL database via a series of web forms for data input.
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
Primary contact for the technical aspects of the imaging data Michelle McGaughey - m.mcgaughey@qub.ac.uk
Retinal imaging Data available

Genetics

Variable Response
Overview
Number Gwas subjects 3295
Gwas platform IScan running Infinium CoreExome-24 BeadChip
N imputed subjects 3295
N Whole Exome sequenced 0
N Whole genome sequenced No: 0
N APOE genotyped 1,2990 (No SNP's, No participants passing QC)
Gene screening
APOE Yes: SNP rs7412, after imputation (indirectly typed) & rs429358

Biological samples

Variable Response
Blood collected Yes
Plasma Yes
Serum Yes
RNA Yes
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) Yes
eGFR (estimated Glomular Filtration Rate) Yes: Based on CKD-Epi
Glucose Yes
HbA1c Yes: Measured locally
Lipids Yes: Total Cholesterol, Direct LDL, HDL-Cholesterol, Lipoprotein, Triglcerides, Apolipoprotein A, Apolipoprotein B
Liver Function Tests Yes: Albumin, Direct Bilirubin, Total Bilirubin, Total Protein, Aspartate amino-transferase, Alanine amino-transferase, Gamma Glutamyl-transferase, Alkaline phosphatase, Urea
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

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
Comments: Yes to quantity - timeframe only known from first reported
Passive smoking Data available
Comments: indirectly if additional household member has taken part and answered to smoking
Current smoking Data available
Former smoking Data available
Alcohol Data available
Units per day/week vs weekend Data available
Specified beverage type (wine, spirits, beers) Data available
Abstainers/former users Data available
Binge drinking Data available
Drugs of abuse assessment
Drugs of abuse assessment - Data available? Data available
Obesity and associated risk factors
BMI Data available
Fat percentage 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
Objective measures of activity Data available
Diet Yes
Carbs, protein, fats, fish oil Data available
Anti-oxidants Data available: (measured in blood sample and determined from FFQ)
Vegetarian? Data available
Coffee and caffeine Data available
Vitamin A, B, E Data available
Fat intake MUFA, PUFA Data available
Food questionnaires Data available
Other dietary items Yes, (all macronutrients and micronutrients)
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Sleep assessment
Other sleep recording (specify) Yes - self reported hours of sleep / medication to aid sleep

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? Yes
Do existing mechanisms for consulting/involving participants exist? Yes
If so, does this happen on an ongoing or an ad hoc basis? Yes
Ethics
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) Feedback from eye images / blood samples
Who is responsible for disclosing incidental findings? Clinical Lead
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? A random but country wide representative sample of households with occupants 50 years and above in residence
Consent and recontact
Is there consent for recontact? Yes

Data Management

Variable Response
Consent for linkage to routine data