Cohort Descriptives

Variable Response
Cohort name HealthWise Wales
Cohort acronym HWW
General Study Overview HealthWise Wales aims to: a) create a register of participants that are ready to participate in research studies, b) actively engage the population in health and social care research, and c) develop a cohort to investigate the widest possible range of social, environment and biological determinants of health and wellbeing during the life-course, and evaluate interventions for effectiveness.
Number of subjects at baseline 6,100 (February 2017)
Institution name Cardiff University, Health and Care Research Wales
Department name Division of Population Medicine
City Cardiff
Study or database website

https://www.healthwisewales.gov.wales

Principal Investigator (PI): Name Prof. Shantini Paranjothy
PI: Address Division of Population Medicine, Cardiff University, 3rd Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS
PI: email

paranjothys@cardiff.ac.uk

PI: phone 029 2068 7245
Administrative Contact (AC): Name Charlotte Bonner-Evans
AC: Address Division of Population Medicine, Cardiff University, 5th Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS
AC: email Bonner-EvansC@cardiff.ac.uk
AC: phone 029 2068 7172
Technical Contact/Data manager (TC): Name Luke Heslop
TC: Address Division of Population Medicine, Cardiff University, 3rd Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS
TC: email

HeslopL1@cardiff.ac.uk

TC: phone 029 2068 7254
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? Internet: Online
Who carries out data collection? Participants
Does this take place in participants' homes or at a central location? Home
Do participants take part individually or are families/partners involved? Individually
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? No
How many times followed up? 1
How regular is follow-up? Every 6 months
Study start date 2015-05-01
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria 16+ years of age, living and accessing healthcare in Wales
Exclusion criteria Under 16 years of age, not living in Wales

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia No
Age at last follow-up No
Age at time of death Yes
Sex Yes
Ethnicity Yes
Education No
Physical examinations
Any physical examination performed? Yes
Weight Data available
Comments: Self-reported
Height Data available
Comments: Self-reported
Medical conditions

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? No
IQ data available? No
NART No
Cognitive background? No
Level of education No
Standard dementia global cognition scales? No
MMSE No
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
3MS No
GPCOG No

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia No
Lewy Body Disease No
Huntingtons Disease No
Parkinsons Disease No
Frontotemporal dementia No
Vascular dementia No
MCI No
Subjective complaint No
Functional rating scales
Any information on dementia rating collected? No
Any information on subjective complaints collected? Yes
Any neuropsychiatric rating scale administered? Yes
Specify any other scales Yes
Any Quality of Life Data Colllected? No
Any information on Caregivers and Caregiving Collected? Yes
Specify any other caregiver scales Participants are currently asked two questions regarding caregiving (e.g. if they are providing care and if they have had to give up work to do so)
Health service utilisation
Any Health Resource Utilisation Collected ? Yes
Other neurological or psychiatric measurements? No

Imaging

Variable Response

Genetics

Variable Response
Overview
Gene screening

Biological samples

Variable Response
Blood Metabolic Analytes
Urine collection
Autopsy data
Saliva
CSF

Brain donation

Variable Response

Lifestyle

Variable Response
Smoking Yes
Pack years Data available
Passive smoking Data available
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
Obesity and associated risk factors
Physical activity and exercise Yes
Type of exercise: heavy, light Data available
Exercise duration Data available
Occupation possible job matrices Data available
Diet Yes
Employment status
Employment status Data available
Living situation
Socioeconomic status
Sleep assessment

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? Ongoing. There are two members of the public who sit on the study management team, every study using data from the study are assessed to ensure that they have included adequate public and/or patient involvement in the development of the methods, and the main governance of the study is via a Public Delivery Board which is made up of a majority of lay members.
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? Not within the governance structures of the study itself (the Scientific Steering Committee and the Public Delivery Board). The study received ethical approval from the Wales REC 3 committee. We report to this committee on a yearly basis and all changes to the study methodology (e.g. the insertion of new questionnaires) are submitted to the committee a substantial amendments to our ethical approval.
Does the cohort include participants who lack capacity? No
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
Do procedures exist for the disclosure of incidental findings? No
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
How was the cohort recruited (NHS or not, primary or secondary care)? Project team members for HealthWise Wales are currently providing information and raising awareness about the project through media platforms, at various events with the general population (including events such as Cardiff Food and Drink Festival, and the Royal Welsh Show following invited presentations), and at various NHS sites such as GP surgeries, outpatient departments and antenatal clinics. There is also a proposal for active face-to-face recruitment that is currently being assessed by the ethics committee.
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? "When participants register for HealthWise Wales, part of the informed consent for the project is recontact. When registering, participants give their consent to be contacted every 6 months or so by the HealthWise Wales research team to complete new questionnaires, and to be contacted by the research team about other studies that participants might be interested in.
"

Data Management

Variable Response
Consent for linkage to routine data