Cohort Descriptives

Variable Response
Cohort Name The Exeter 10,000 project
Cohort Acronym EXTEND
DOI Hattersley, A. (2020). EXTEND [Data set]. Dementias Platform UK. https://doi.org/10.48532/025000
Study Overview A re-contactable research volunteer register and sample biobank of local people with and without health problems who are willing to provide blood and urine samples, have their blood pressure taken and answer simple health and lifestyle questions. Half of the sample taken is used to measure diagnostic markers including blood sugar and cholesterol, which can be shared with the volunteer and the remaining half (requiring consent from the participant) is saved in a biobank. Participants without diabetes will be offered the opportunity to receive a copy of their health measures and blood tests. They may also choose to have these results copied to their doctor. Participants are invited to a return visit (after around three years) to replace samples that have been used up, and update the measurements and other health data recorded The Peninsula Research Bank (PRB) holds the data and banked samples of DNA, urine, serum, plasma and prospectively collected RNA/ whole blood for long term management. The Extend/PRB Biobank enables research into why some people are predisposed to develop a disease as they get older and why some people are protected. The EXTEND register volunteers who are identifiable by phenotype and genotype and agree that they can be contacted to participate in various research projects based on their genetic predisposition have the choice of whether they wish to be involved in studies about Dementia/Alzheimer's disease. Participants can give permission for Researchers to access their medical records.
#Subjects at Baseline >11,000
Institution Name University of Exeter Medical School in partnership with the Royal Devon and Exeter NHS Foundation Trust
Department Name NIHR Exeter Clinical Research Facility
City Exeter
Study/Database Website

https://exetercrfnihr.org/about/exeter-10000-prb/

Principal Investigator (PI) Professor Andrew Hattersley
Key Study References

Please see Publications

Population Based Study? No
Family Based Study? No
Clinical based sample? No
Is there follow-up data available? Intention to recall every three years
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
Who carries out data collection? Research nursing staff
Does this take place in participants' homes or at a central location? Central location
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? N/A
How many times followed up? Participants are invited for a return visit approximately 3 years after their initial visit to update their information and restock their samples
# Subjects at Follow-up
Study start date 3/23/2010 12:00:00 AM
Study end date
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Originally: Over 18 years and lives within 25 miles of Exeter. Amended to over 16 years and also to volunteer who can visit Exeter for their appointment
Exclusion criteria

Administration

Variable type
Unique Individual Serial Number
Age At Last Birthday
Sex
Email Access

Sociodemographic

Sub-category Variable type Baseline
Education Educational qualifications in list NVQ - Degree Y
Education Other Professional qualifications Y
Education No qualifications in list Y
Education Occupational class code (Cascot score calculated from occuption) Y
Employment Ever been employed Y
Employment Currently unemployed Y
Employment Currently a student Y
Employment What has been main occupation Y
Employment Full time homemaker Y
Employment Retired Y
Ethnicity Ethnic Origin (NHS Standard list) Y

Family History

Sub-category Variable type Baseline
Extended Any family have Alzheimer's/Dementia Y
Extended Any family have Asthma Y
Extended Any family have Cancer Y
Extended Any family have Chronic Bronchitis/Emphysema Y
Extended Any family have Diabetes Y
Extended Any family have Irritable Bowel/UC/Crohns Y
Extended Any family have Heart Disease Y
Extended Any family have High Blood Pressure Y
Extended Any family have Kidney Disease Y
Extended Any family have Liver Disease Y
Extended Any family have Rheumatoid Arthritis/Lupus Y
Extended Any family have Stroke Y
Extended Any family have Diagnosed mental problems Y

Physical Health Status

Sub-category Variable type Baseline
Cancer Cancer type Y
Cardiothoracic Heart disease Y
Cardiothoracic Atrial Fibrilation Y
Cardiothoracic High blood pressure (needing treatment) Y
Cerebrovascular Stroke Y
ENT Gum problems Y
ENT How many teeth do you have Y
ENT Would you need dental treatment tomorrow Y
Gastrointestinal Irritable Bowel/UC/Crohns/Diverticulitus Y
Gastrointestinal Renal disease Y
Gastrointestinal Liver disease Y
General Health Diabetic (non-fasting test for diabetics) Y
General Health T1 or T2 or Monogenic diabetes Y
General Health Other conditions diagnosed by doctor Y
Reproductive Fertility problem diagnosed by doctor Y
Reproductive Polycystic ovary disease Y
Respiratory Asthma Y
Respiratory Chronic Bronchitis/Emphysema Y
Rheumatology Rhematoid Arthritis/Lupus Y

Reproductive History

Sub-category Variable type Baseline
Female Age when periods started Y
Female Menopause over Y
Female Currently going through menopause Y
Female Age of starting menopause Y
Female Have you used HRT Y
Female Currently using HRT Y

Healthcare Utilisation

Sub-category Variable type Baseline
Medications Current Medications Y

Psychological Status

Sub-category Variable type Baseline
Sleep Sleep through day when not meaning to Y
Sleep Do you get compliants about your snoring Y

Mental Health Status

Sub-category Variable type Baseline
Mood Depression requiring regular medical treatment Y
Mood Diagnosed mental health problem Y

Lifestyle

Sub-category Variable type Baseline
Alcohol How often drink alcohol Y
Alcohol High Alcohol consumption (F >21, M>28 ) Y
Alcohol Drinks red wine Y
Alcohol Drinks white wine Y
Alcohol Drinks spirits Y
Alcohol Drinks beer Y
Alcohol Drinks cider Y
Alcohol Mixed drinks/ cocktails Y
Diet Portions of fruit a day Y
Diet Portions of vegetables a day Y
Diet Red meat Y
Diet Poultry Y
Diet Fish Y
Diet Pre-packaged ready meals Y
Diet Dairy products Y
Diet Eggs Y
Diet Vitamin A Y
Diet Vitamin E Y
Diet Multiminerals Y
Diet Multivitamins Y
Diet Other supplements Y
Physical Quarter mile walk unaided Y
Physical Walk for pleasure Y
Physical Walking as means of transport Y
Physical Other Exercise Y
Physical Exercise causing increased pulse >2.5 hours per week Y
Physical Strenuous Sport Y
Physical Light DIY Y
Physical Heavy DIY Y
Smoking Current Smoker/Amount smoked per day Y
Smoking Amount smoked per day Y
Smoking Type smoked Cigarette/Cigar/Pipe Y
Smoking Time of first cigarette Y
Smoking Smoked > 100 times in lifetime Y
Smoking What year last smoked Y
Smoking Extent (hours) exposed to passive smoke at home Y

Physical Examination

Sub-category Variable type Baseline
Anthropometry Height (cm) Y
Anthropometry Weight (kg) Y
Anthropometry BMI Y
Anthropometry Hips (cm) Y
Anthropometry Waist (cm) Y
Anthropometry Waist Hip Ratio Y
Anthropometry Body Fat Percentage Y
Anthropometry Arm Girth (cm) Y
Heart Mean Systolic BP Y
Heart Mean Diastolic BP Y
Heart Pulse (bpm) Y
Heart Pulse Regular? Y

Biosample Assays

Sub-category Variable type Baseline
Biochemistry Alanine Transaminase (ALT) Y
Biochemistry Albumin Y
Biochemistry Alkaline phosphatase Y
Biochemistry Bilirubin Y
Biochemistry Cholesterol Y
Biochemistry Creatinine Y
Biochemistry Glucose Result Y
Biochemistry High-density lipoprotein HDL Y
Biochemistry HDL Ratio Y
Biochemistry Low-density lipoprotein LDL (10 hr fast only) Y
Biochemistry Potassium Y
Biochemistry Sodium Y
Biochemistry Urea Y
Biochemistry Urine sample (1.2 ml aliquot) Y
Biochemistry Triglycerides (10 hour fast only) Y
Haematology Haemoglobin A1c (HbA1c) mmol/mol Y
Haematology White blood cell count (WBC) Y
Haematology Haemoglobin concentration (HB) Y
Haematology Platelet count Y
Haematology Blood sample for Plasma (0.6ml aliquot) Y
Haematology Blood sample for Serum (0.6ml aliquot) Y
Haematology Whole Blood sample Y
Haematology Fasting or Not Fasting Blood Test Y

Genomics

Sub-category Variable type Baseline
Genotyping Pre-extracted DNA (100ul aliquot of +/- 100ng/ul) Y
Genotyping RNA Paxgene tubes Y