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 | |
| Principal Investigator (PI) | Professor Andrew Hattersley |
| Key Study References | |
| 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 | 23/03/2010 00:00:00 |
| 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 |