Cohort Descriptives

Variable Response
Cohort name The European Prospective Investigation of Cancer - Norfolk
Cohort acronym EPIC Norfolk
General Study Overview The Norfolk component of the European Prospective Investigation of Cancer (EPIC Norfolk) participants are men and women who were aged between 40 and 79 when they joined the study and who lived in Norwich and the surrounding towns and rural areas. They have been contributing information about their diet, lifestyle and health through questionnaires and health checks over two decades.
Following baseline data collection the cohort has been followed up at 18 months by questionnaire, 3 years (1997-2000) - second health check and questionnaire, 10 years - health questionnaire , 13 years (2006-2011) – third Health examination and questionnaire.
The primary aim of the international EPIC collaboration is to examine the relationships between diet and incident cancers, that is, cancers which have developed after they joined the study. The study has since broadened to include lifestyle and genetic factors and other diseases.
A secondary aim is to study the relationship between dietary intake and other diseases and disease risk factors. In EPIC-Norfolk, these include heart attacks and strokes, rheumatoid arthritis, diabetes, thyroid disease, osteoporosis, dementia, eye diseases and many others. The EPIC Norfolk team are also studying the link between disease and other factors, such as psychosocial health.
Number of subjects at baseline 25,639 have had a Health Check and are being followed. (30,000 consented and filled out a questionnaire)
Institution name University of Cambridge
Department name Strangeways Research Laboratory
City Cambridge
Study or database website

http://www.srl.cam.ac.uk/epic/

Principal Investigator (PI): Name Principal Investigator: Professor Kay-Tee Khaw Address:
PI: Address Strangeways Research Laboratory, Wort's Causeway Cambridge, CB1 8RN
PI: email

kk101@medschl.cam.ac.uk

PI: phone +44 1223 336927
Administrative Contact (AC): Name Dr Shabina Hayat
AC: Address Strangeways Research Laboratory, Wort's Causeway Cambridge, CB1 8RN
AC: email Epic@srl.cam.ac.uk
AC: phone Tel: 01223 740170
Technical Contact/Data manager (TC): Name Robert Luben
TC: Address Strangeways Research Laboratory, Wort's Causeway Cambridge, CB1 8RN
TC: email

robert.luben@phpc.cam.ac.uk

Key study references

Open literature list

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? In person
postal
combination
Who carries out data collection? Interviewers
Clinical staff: Research nurses, research assistants. Specifically trained and annual refresher
Does this take place in participants' homes or at a central location? Home
Central: Homes for questionnaires
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 Unknown
Was diagnosis/primary outcomes made blind to exposure variables? Unknown
How many times followed up? 4
How regular is follow-up? Less often
Less often: Post baseline: 18 months by questionnaire, 3 years post baseline (1997-2000) - second health check and questionnaire- remit broadened to include bone health, 10 years - health questionnaire , 13 years (2006-2011) third Health Check and questionnaire- broadened remit to include cognitive health and visual health. Currently undergoing 4th Health Check.
Study start date 1993-01-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria 40-79 years of age at onset.
Lives in Norfolk.
Contactable via GP register.
Exclusion criteria Diagnosed with cancer.

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia No
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
Assessed before onset of dementia
Comments: Brachial pressure and heart rate measured with Accutorr PlusTM automatic sphygmomanometer blood pressure monitor (Datascope Medical, Huntingdon, UK). Also measured was Ankle Brachial Pressuresausing the mini Dopplex D990 Doppler Pen with ultrasonic Doppler flow detector (Huntleigh Healthcare, UK).
Weight Data available
Assessed before onset of dementia
Height Data available
Assessed before onset of dementia
Extrapyramidal symptoms Data available
Assessed before onset of dementia
Comments: Usual walking speed, standing balance, chair stands, grip strength using a Smedley’s Dynamometer (Scandidact, Kvistgaard, Denmark) on 3rd and 4th Health Check.
Heart Rate Data available: 3rd Health Check
Anthropometry Data available
Assessed before onset of dementia
Comments: Body fat percentage measured using TANITA TBF-300 MA Body Composition Analyser (Tanita UK, Yiewsley, UK). In 4HC: iDEXA Scanner (DEXA= Dual Energy X-Ray Absorptiometry) from 2nd, 3rd and 4th Health Check.
Cardiovascular examination Data available
Assessed before onset of dementia
Specific assessment of peripheral vascular disease Data available
Assessed before onset of dementia
Comments: Ankle brachial measures from 3rd Health Check.
Respiratory examination Data available
Assessed before onset of dementia
Comments: Respiratory function using a portable spirometer (Micro Medical, UK) from 1st, 2nd, 3rd Health Check.
PEFR Data available
Assessed before onset of dementia
Comments: Respiratory function using a portable spirometer (Micro Medical, UK) from 1st, 2nd, 3rd Health Check.
Spirometry Data available
Assessed before onset of dementia
Comments: Respiratory function using a portable spirometer (Micro Medical, UK) from 1st, 2nd, 3rd Health Check.
Gait assessment Data available
Assessed before onset of dementia
Comments: Usual walking speed on 3rd and 4th Health Check.
Opthalmic examination Data available
Assessed before onset of dementia
Comments: Visual acuity using the LogMAR visual acuity chart 1 (Precision Vision, LaSalle, IL, USA), intraocular pressure using an AT555 Non-Contact Tonometer (Reichert, New York, USA) and later using the Ocular Response Analyzer (ORA, Reichert, New York, USA), axial length and anterior chamber depth using IOLMaster, (Carl Zeiss Meditech, Welwyn Garden City, UK), retinal nerve fibre layer thickness (GDx VCC, Zeiss, Dublin, CA, USA). Threshold visual field analysis was done with the Humphrey field analyser (Carl Zeiss Meditech), optic nerve head topography determined using the HRT II (Heidelberg Retina Tomograph, Heidelberg Engineering, Heidelberg, Germany), colour fundus photography of optic disc and macula using a Topcon non-mydriatic retinal camera TRC-NW6S and IMAGEnet Telemedicine System (Topcon Corporation, Tokyo, Japan) with a 10- megapixel Nikon D80 camera (Nikon Corporation, Tokyo, Japan). Repeated collection for most measures.
Acuity Data available
Assessed before onset of dementia
Comments: Visual acuity using the LogMAR visual acuity chart 1 (Precision Vision, LaSalle, IL, USA).
Visual fields (direct/indirect) Data available
Assessed before onset of dementia
Comments: hreshold visual field analysis was done with the Humphrey field analyser (Carl Zeiss Meditech).
Specify any others EPIC Norfolk Eye Study: A total of 8623 participants aged 48–92 years attended the Eye Study and underwent assessment of visual acuity, autorefraction, biometry, tonometry, corneal biomechanical measures, scanning laser polarimetry, confocal scanning laser ophthalmoscopy, fundal photography and automated perimetry.
Ultrasound measure of the calcaneus (heel bone): Attenuation of broadband ultrasound(dB/MHz) and speed of sound (m/s) were measured three times on each foot with CUBA clinical instrument (McCue Ultrasonics, Winchester, UK). Added from the 2nd Health Check and repeated on 3rd. Not done on the 4th Health Check.
Skin ageing: Digital Images of skin on face and hands taken and stored for future grading on Health Check 3 only.
Medical conditions
Cardiovascular disease data Yes
Myocardial infarction Data available
Comments: Self report and through data linkage.
Medication use for CVD Data available
Hypertension Data available
Systolic/diastolic BP Data available
Comments: Assessed at Health Checks 1, 2, 3 and planned for 5.
Mean arterial pressure Data available
Hypotension Data available
Comments
Hypercholesterolemia Yes
Virus testing No data available
Olfactory sensitivity Yes
Medication use Yes
Drug coding system: Self report and through data linkage. Drug coding system set up locally by clinicians.
Cancer Data available
Diabetic Status Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available: 48-92 years of age
N (estimate) : 8585
List all tests: See Associative Learning.
Computerised: CANTAB PAL (Cambridge Cognition) 8 Stage version. Also done in imaging pilot study.
Verbal Memory Data available
Data available: 48-92 years of age
N (estimate): 8585
Comments: Participants were asked to memorise words presented on a computer screen. At the end of the presentation participants were asked to recall the words. The list was shown a further two times. Correctly recalled words were recorded and the combined score of all three trials (Total HVLT Score) was used as the outcome measure.
List all tests: Hopkins Verbal Learning Test
Computerised
Attention Data available
Data available: 48-92 years of age
N (estimate): 8585
Comments: Letter cancellation. This task involved a visual search of a set of random letters with the aim of crossing out as many of the 72 possible target letters (P and W) within one minute. The outcome measure was ‘Accuracy Score’ (number of correctly identified target letters minus all potential target letters missed).
List all tests: Letter cancellation
Pen and paper
Reaction time Data available
Data available: 48-92 years of age
N (estimate): 8585
List all tests: Visual Sensitivity Test (reaction time)
Computerised
Associative learning Data available
Data available: 48-92 years of age
N (estimate): 8585
List all tests: Paired Associates Learning
Computerised: CANTAB PAL (Cambridge Cognition) 8 Stage version. Also done in imaging pilot study.
Language Data available
Data available: 48-92 years of age
N (estimate): 8585
List all tests: Hopkins Verbal Learning Test.
Computerised
Vigilance Data available
Data available
N (estimate): 8585
List all tests: Letter cancellation. This task involved a visual search of a set of random letters with the aim of crossing out as many of the 72 possible target letters (P and W) within one minute. The outcome measure was ‘Accuracy Score’ (number of correctly identified target letters minus all potential target letters missed).
Pen and paper
Concentration Data available
Data available
N (estimate): 8585
List all tests: Letter cancellation. This task involved a visual search of a set of random letters with the aim of crossing out as many of the 72 possible target letters (P and W) within one minute. The outcome measure was ‘Accuracy Score’ (number of correctly identified target letters minus all potential target letters missed).
Pen and paper
Working memory Data available
Data available
N (estimate): 8585
List all tests: Hopkins Verbal Learning
Pen and paper
Latent memory Data available
Data available
N (estimate): 8585
Comments
List all tests: Hopkins Verbal Learning Test recall section
Pen and paper
Planning Data available
Data available: 48-92 years of age
N (estimate): 8585
Comments: This is a test for the memory for future intentions, previously suggested to be sensitive to early stages of cognitive decline. Participants were asked to remember to carry out an explicit instruction at a specified point later in the appointment. Participants were defined as being ‘successful’ if they carried out at least one correct action without having to be prompted.
List all tests: Prospective Memory Test
Pen and paper
Abstraction Data available
Data available: Concrete abstraction
N (estimate): 8585
Comments
List all tests: 'How is a boat and a car alike' - from short Form ExtendedMSE
Pen and paper
Other cognitive tasks See Hayat et al (2014) for all information regarding cognition in this cohort.
IQ data available? Yes
NART Yes
IQ other (list) In this study, the short NART protocol was used. The outcome measure was ‘NART Error Score’, where a higher score indicates lower performance.
48-92 years of age
Cognitive background? Yes
Years of education Yes
Level of education Yes
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
Subgroup
Comments: 8585 participants 48-92 years of age carried out both SF-MMSE and SF-EMSE. Short Form MMSE (SF-MMSE) predicts the full-scale MMSE score by assuming an almost perfect performance on the excluded items in a highly functioning population. The ‘full derived’ MMSE score (SF-MMSE Score +14) was used in the analysis here to allow the comparison of the other components of the battery using the SF-MMSE scores as a validated and recognised standard. Also, they carried out the Short Form Extended MSE (SF-EMSE). The original EMSE consists of 47 items in total including items from the Cambridge Mental Disorders of the Elderly Examination (CAMDEX) interview schedule as well as items recommended in the report from the MRC Alzheimer’s Disease Workshop in 1987. Here, we used a modified shorter version consisting of 26 selected items assessing functioning at the higher end of the ability range.
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam Yes
Subgroup
Comments: ACE-R. Only done on 68 people who are in the DTI imaging pilot study .
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
Dementia diagnosis (Other comments) No
Functional rating scales
Any information on dementia rating collected? No
ADCS-ADL No
ADCS-ADL-MCI No
Blessed Dementia Scale No
Clinical dementia rating scale (CDR) No
Complex Activities of Daily Living No
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? No
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) 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) No
Specify any other scales No
Any Quality of Life Data Colllected? No
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 No
Short Form (SF) 36 No
Health Utilities Index 1, 2 or 3 No
Any information on Caregivers and Caregiving Collected? No
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) No
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 ? No
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 No
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? No
Stroke type No
Transient Ischemic Attack No
Carotid plaques No
Any head trauma data? No
Sports, soccer and boxing No
BISQ or equivalent No
EEG No
Psychiatric evaluations Yes
CESD scale (depression) No
Personality evaluation No
Apathy evaluation No
Anxiety measure Yes
Resilience evaluation No

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? Voxel-based analysis of the DTI data was performed using TBSS (tract-based spatial statistics) implemented with the FMRIB Software Library 4.1.5 (FSL, Oxford Centre for Functional MRI of the Brain, UK, www.fmrib.ox.ac.uk/fsl).
Structural T1 Acquired
Acquired: Three acquisitions were included: (i) T1-weighted volumetric (MPRAGE, 1.25mm isotropic voxel dimension), (ii) T2-weighted volumetric acquisition (3D-SPACE, 1.25mm isotropic voxel dimension), and, (iii) DTI using a single shot EPI sequence (63 directions, b=1000s/mm^2, 2mm isotropic voxel dimension).
N controls: 67 people in a pilot study. The participants were from the general population with a fraction weighted towards having more vascular risk factors and another fraction weighted towards mild cognitive impairment.
Acquisition period: 2011
Manufacturer: Siemens
Model: TIM Trio
Scanner N: Single
Field strength: 3T
Fluid attenuation inversion recovery (FLAIR) Not acquired
Not acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired: Microstructural white matter changes were assessed with DTI measures of fractional anisotropy (FA) and using tract-based spatial statistics. Voxel-based analysis of the DTI data was performed using TBSS (tract-based spatial statistics) implemented with the FMRIB Software Library 4.1.5 (FSL, Oxford Centre for Functional MRI of the Brain, UK, www.fmrib.ox.ac.uk/fsl)
N controls: 67 people in a pilot study. The participants were from the general population with a fraction weighted towards having more vascular risk factors and another fraction weighted towards mild cognitive impairment.
Acquisition period: 2011
Manufacturer: Siemens
Model: TIM Trio
Scanner N: Single
Field strengths: 3T
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
Do you use an imaging data management system (e.g. XNAT or LORIS)? No
Primary contact for the technical aspects of the imaging data Thais Minnett tsm34@medschl.cam.ac.uk
Retinal imaging Data available: A total of 8623 participants aged 48–92 years attended the Eye Study and underwent assessment of visual acuity, autorefraction, biometry, tonometry, corneal biomechanical measures, scanning laser polarimetry, confocal scanning laser ophthalmoscopy, fundal photography and automated perimetry.
Macular degeneration Data available

Genetics

Variable Response
Overview
Number Gwas subjects Controls N
Controls N: 25,000
Controls % male: Approx 50%
Gwas platform Affymetrix
ExomeChip versions Affymetrix Axiom
N not APOE genotyped Controls N
Controls N: 25,000+
Comments: Bloods stored for future genotyping.
Gene screening
APOE No
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
Repeated Collection
Comments: Stored for future biochemical profiling and DNA extraction
Serum Yes
Repeated Collection
Comments: Stored for future biochemical profiling and DNA extraction
RNA No
DNA Yes
Repeated Collection
Comments: Serum, plasma and whole blood stored for future biochemical profiling and DNA extraction from 1st, 2nd, 3rd Health Checks.
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
CRP (c-reactive protein) Yes
Repeated Collection
Comments: Health Check 1 and 3.
eGFR (estimated Glomular Filtration Rate) No
Glucose Yes
No
Repeated Collection
Comments: Health Check 1 and 3. Non-fasted.
HbA1c Yes
Repeated Collection
Comments: Health Check 1 and 3.
Lipids Yes
Repeated Collection
Comments: Lipid profile (total cholesterol, HDL LDL, triglyceride. Health Check 1 and 3.
Liver Function Tests Yes
Comments: Baseline only
Serum creatinine Yes
Repeated Collection
Homocysteine Yes
Comments: Very small substudy
Folate Yes
Comments: Small substudy. Can infer from food diary.
Other blood samples No
Are laboratory protocols and storage information available for bloods Yes
Urine collection
Urine Yes
Repeated Collection
Details: Stored at -80. Collected for Health Check 1 and 2.
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
Are CSF laboratory protocols and storage information available? No
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
Specified beverage type (wine, spirits, beers) Data available
Abstainers/former users Data available
Binge drinking Data available
Comments: Might be able to infer from food diaries
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Hip/waist circumference Data available
Fat percentage Comments: Body fat percentage measured using TANITA TBF-300 MA Body Composition Analyser (Tanita UK, Yiewsley, UK). In 4HC: iDEXA Scanner (DEXA= Dual Energy X-Ray Absorptiometry)
Blood lipids Data available: Objectively measured from blood. Full lipid profile and cholesterol
Metabolic syndrome Data available: Self report, linkage from records.
Type of exercise: heavy, light Data available
Exercise duration Data available
Occupation possible job matrices Data available
Objective measures of activity Data available: Physical activity using a commercial accelerometer, the GT1M (Actigraph, Florida, USA). in 4HC: Participants will also be asked to wear an activity monitor and a GPS receiver for 7 days following their appointment. Using the gathered data, we will be better able to analyse both the level and the patterns of physical activity being undertaken to subsequently better assess free living activity levels.
Other measurements of activity Self-report on physical activity behaviours in three domains: activity at home, work and recreation. Also, using Geographical Information Systems (GIS) with Neighbourhood Environment Walkability Scale (NEWS) to observe how environmental factors play a role in determining behaviour. Subset of people also using GPS.
Diet Yes
Carbs, protein, fats, fish oil Data available
Comments: Can infer from food diaries
Anti-oxidants Data available
Comments: Can infer from food diaries
Vegetarian? Data available
Comments: Can infer from food diaries
Shortage of food Data available
Comments: Can infer from food diaries
Coffee and caffeine Data available
Comments: Can infer from food diaries
Vitamin A, B, E Data available
Comments: Can infer from food diaries
Fat intake MUFA, PUFA Data available
Comments: Can infer from food diaries
Food questionnaires Data available
Comments: Food Frequency Questionnaire
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Sleep assessment
Questionnaires Data available: EPIC Health Questionnaire
Other sleep recording (specify) Planning to add more sleep questions to the questionnaire

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? The EPIC - Norfolk Participant Advisory Panel consists of 12 people. These people have been informed about the EPIC involvement in DPUK.
http://www.srl.cam.ac.uk/epic/participant_panel.html
Do existing mechanisms for consulting/involving participants exist? EPIC Participant Advisory Panel, 12 people. Advise on questionnaires and newsletters. The Panel eet with the research team three times a year. They consulted and helped on Section 251 application (Section 251 allows access to data without consent and allows the team to follow up participants who no longer take part (non-responders), to avoid biasing the sample).
If so, does this happen on an ongoing or an ad hoc basis? Ongoing
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? No
If yes, who is represented on it? NA
Does the cohort include participants who lack capacity? No
Is there a process in place for participants who lose capacity? No
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? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Only clinically relevant samples. The team would not report back genetics or cognitive tests and have stated this in the participant consent sheets. Blood pressure and blood cholesterol and DXA bone health check reported to GPs after being reviewed by a team physician.
Who is responsible for disclosing incidental findings? GP
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)? NHS GP register in Norfolk
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? For studies other than the core EPIC study, the research team have contacted the participants outlining the separate study and have asked for their permission to pass over contact details. The coordinator for that separate study then would have contacted the EPIC participants directly.

Data Management

Variable Response
Consent for linkage to routine data
Which parts of the UK are represented by participants in your cohort? England
England: Norfolk