Cohort Descriptives
| Variable | Response |
|---|---|
| Cohort Name | The Secure Anonymised Information Linkage Databank Dementia e-Cohort |
| Cohort Acronym | SAIL-DeC |
| DOI | Wilkinson , T. (2017). SAIL-DeC [Data set]. Dementias Platform UK. https://doi.org/10.48532/042000 |
| Study Overview | SAIL-DeC is a nationwide dementia electronic cohort for Wales created from a cohort of participants of the SAIL Databank for whom primary care data were available. The SAIL Databank (4,389,213 participants, approximately 80% of the Welsh population and representative of the wider population), contains anonymised, individual-level, linked routinely-collected health and social care information including primary care (General Practitioner), hospital admissions, mortality and demographic data as well as a population spine that allows for linkage across multiple health datasets. The SAIL-DeC cohort consists of people born between 1st January 1900 and 1st January 1958. The database consists of administrative data so does not require the usual participant consent. SAIL-DeC was contructed using the linked primary care, hospital admissions and mortality and deprivation datasets. A validated algorithmn applied ICD-9, ICD-10 and Read V2 codes to identify cases of all-cause dementia and dementia sub-types in the primary and secondary care and mortality data. Derived variables were created for comorbidities and risk factors. This virtual ‘electronic-cohort’ for dementia research organises and simplifes the complex SAIL dataset thus reducing the work time and costs. The intention is also for it to be flexibility and reproducible meaning researchers can use the resource to answer a wide range of longitudinal dementia-related questions. SAIL-DeC will be maintained and updated over time, as newer data become available. |
| #Subjects at Baseline | 1,246,557 in the initial cohort. |
| Institution Name | Swansea University, University of Edinburgh |
| Department Name | (Swansea: Health Data Research UK Wales and Northern Ireland, Edinburgh: Usher Institite of Population Health Sciences and Informatics |
| City | Across Wales |
| Study/Database Website | |
| Principal Investigator (PI) | Dr Tim Wilkinson (University of Edinburgh) |
| Key Study References | |
| Population Based Study? | Yes |
| Family Based Study? | No |
| Clinical based sample? | No |
| Is there follow-up data available? | Not yet |
| 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? | By Algorithmn applied to the SAIL Databank, a privacy protecting safe haven |
| Who carries out data collection? | SAIL-DeC data research, from SAIL Databank collected data |
| Does this take place in participants' homes or at a central location? | Central |
| Do participants take part individually or are families/partners involved? | Individually |
| Dementia cases ascertained as part of study: | Yes, a validated algorithm identifies all-cause dementia cases from coded primary care, hospital admission and mortality datasets |
| Diagnosis based on review of existing clinical data | No |
| Was diagnosis/primary outcomes made blind to exposure variables? | No |
| How many times followed up? | 0 |
| # Subjects at Follow-up | |
| Study start date | 20/08/2018 00:00:00 |
| Study end date | |
| Is study ongoing? | Yes |
| Is study still recruiting? | |
| Inclusion criteria | All participants in the SAIL databank with Primary Care data available based on being registered with a SAIL contributing General Practice at any point and born between 1st January 1900 and 1st January 1958, currently alive or recorded date of death on or between 1st January 1980 and 1st January 2020. |
| Exclusion criteria | No valid GP registration start or end date, recorded date of birth before 1st January 1900, or date of death recorded as either before 1st January 1980 or after 1st January 2020. Patients who had a dementia diagnosis without a valid date i.e. before 1st January 1900 or after 1st January 2018. |
Administration
| Variable type |
|---|
| Participant ID |
| Month/Year of birth |
| Date aged 60 |
| Date of Death |
| Sex |
| Start Date - registration with GP |
| End Date - deregistration with GP or death |
Sociodemographic
| Sub-category | Variable type | Baseline |
|---|---|---|
| Deprivation | Latest WIMD (Welsh Index of Multiple Deprivation) Quintile (2011) | Y |
| Deprivation | Latest WDSD (Welsh Demographic Service Dataset) (2018) | Y |
| Deprivation | Census Reporting Zone- Lower Layer Super Output Areas (LSOAs) (2001) | Y |
Physical Health Status
| Sub-category | Variable type | Baseline |
|---|---|---|
| Cancer | Cancer type | Y |
| Cardiothoracic | Atrial Fibrillation types | Y |
| Cardiothoracic | Heart Failure types | Y |
| Cardiothoracic | Essential Hypertension | Y |
| Cardiothoracic | Hypertensive heart disease | Y |
| Cardiothoracic | Secondary hypertension | Y |
| Cardiothoracic | Myocardial infarction types | Y |
| Cardiothoracic | Peripheral vascular disease | Y |
| Cardiothoracic | Other peripheral vascular disease | Y |
| Cardiothoracic | Alcoholic cardiomyopathy | Y |
| Cardiothoracic | Rheumatoid arthritis myocarditis | Y |
| Cerebrovascular | Ischaemic stroke -Cerebral infarction | Y |
| Cerebrovascular | Ischaemic stroke-Subarachnoid haemorrhage | Y |
| Cerebrovascular | Ischaemic stroke-Intracerebral haemorrhage | Y |
| Cerebrovascular | Stroke not specified as haemorrhage or infarction | Y |
| Cerebrovascular | Chronic alcoholic brain syndrome/cerebral degeneration | Y |
| Endocrinology | Hypothyroidism types | Y |
| Endocrinology | Alcohol-induced pseudo-Cushing syndrome | Y |
| ENT | Leukokeratosis nicotina palati | Y |
| Gastrointestinal | Alcoholic liver disease types | Y |
| Gastrointestinal | Alcoholic pancreas disease types | Y |
| General Health | Diabetes | Y |
| General Health | Obesity | Y |
| General Health | Childhood obesity | Y |
| Nephrology | Chronic Kidney Disease (Stage III-IV e) | Y |
| Neurological | Epilepsy | Y |
| Neurological | Alcohol withdrawal-induced seizure | Y |
| Neurological | Motor Neurone disease types | Y |
| Neurological | Spinal muscular atropy | Y |
| Neurological | Anterior horn cell disease | Y |
| Neurological | Degeneration of cerebral or nervous system due to alcohol | Y |
| Neurological | Alcoholic myopathy | Y |
| Pain | Intermittent claudication | Y |
| Pain | Polyneuropathy in rheumatoid arthritis | Y |
| Pain | Alcoholic polyneuropathy | Y |
| Respiratory | Asthma severity | Y |
| Respiratory | Allergic Asthma triggers | Y |
| Respiratory | Absent from work or school due to asthma | Y |
| Respiratory | Asthma Day/night symptoms/disturbs sleep | Y |
| Respiratory | COPD | Y |
| Respiratory | COPD impacts sleep or not | Y |
| Respiratory | Emphysema Type | Y |
| Respiratory | MacLeod syndrome | Y |
| Respiratory | Obstructive chronic bronchitis | Y |
| Respiratory | Other chronic obstructive pulmonary disease | Y |
| Respiratory | Extreme obesity with alveolar hypoventilation | Y |
| Respiratory | Pickwickian syndrome | Y |
| Rheumatology | Rheumatoid Arthritis types | Y |
| Rheumatology | Osteoporosis types | Y |
Healthcare Utilisation
| Sub-category | Variable type | Baseline |
|---|---|---|
| Hospitalisation | Emergency asthma admission | Y |
| Hospitalisation | Drug dependence | Y |
| Hospitalisation | Mental and behavioural disorders due to use of various substances | Y |
| Hospitalisation | Mental and behavioural disorders due to use of alcohol | Y |
| Hospitalisation | Poisoning by Substances | Y |
| Primary Care | Asthma Assessment | Y |
| Primary Care | Asthma control questionnaire | Y |
| Primary Care | COPD Health education /clinical mangement plan | Y |
| Primary Care | COPD Review /follow-up /monitoring | Y |
| Primary Care | Advised to contact primary care alcohol worker | Y |
| Primary Care | Alcohol abuse monitoring | Y |
| Primary Care | Smoking cessation service | Y |
| Primary Care | Intervention for risk to health associated with overweight and obesity, general advice on healthy weight and lifestyle | Y |
| Primary Care | Dietary surveillance and counselling - Obesity referral, monitoring, assessment and treatment, seen dietician. | Y |
| Primary Care | Weight management programmes including National Obesity Observatory Standard Evaluation Framework for weight management interventions - participant satisfaction with intervention | Y |
| Primary Care | Reason for obesity therapy - occupational | Y |
| Primary Care | Dementia care plan/review/monitoring | Y |
| Primary Care | Misuse various substances | Y |
| Psychotherapy | Substance/Drug misuse assessment/clinical management plan | Y |
| Psychotherapy | Substance misuse detoxification /maintenance therapy | Y |
| Medications | Dementia medication review | Y |
| Medications | Anti-obesity drug therapy | Y |
| Medications | Asthma medication review | Y |
| Medications | Long Term Depression Medications | Y |
| Medications | Nicotine replacement therapy | Y |
| Medications | Riluzole 50mg | Y |
| Medications | Rilutex 50mg | Y |
| Medications | Amyotrophic lateral sclerosis drugs Band 1 | Y |
| Medications | Anti-obesity drug therapy | Y |
Mental Health Status
| Sub-category | Variable type | Baseline |
|---|---|---|
| Addictions | Alcohol dependent events | Y |
| Addictions | Chronic alcoholism | Y |
| Addictions | Mental and behavioural disorders due to use of alcohol | Y |
| Addictions | Aversion therapy - alcoholism | Y |
| Addictions | Alcoholic rehabilitation program | Y |
| Addictions | Nondependent alcohol abuse in remission | Y |
| Addictions | Drug addict/user/drug misuse | Y |
| Addictions | Dependence on illicit or recreational drugs | Y |
| Addictions | Misuse of illicit or recreational drugs, solvents, anti-depressants, other substances/misuse frquency | Y |
| Addictions | Age at starting and history of drug or various substances misuse | Y |
| Addictions | Mental and behavioural disorders due to use of various drugs use and use of other psychoactive substances | Y |
| Addictions | Accidental or Intentional poisoning by and exposure to narcotics and psychodysleptics drugs | Y |
| Addictions | Buying drugs/amount spent per day | Y |
| Addictions | Dealing with/selling drugs | Y |
| Addictions | Drug paraphernalia | Y |
| Addictions | Non-dependence various substances abuse | Y |
| Addictions | Behavioural tolerance to drug | Y |
| Addictions | Time devoted to drug related activity | Y |
| Addictions | Mental and behavioural disorder due to use of tobacco | Y |
| Addictions | History of tobacco abuse | Y |
| Addictions | Tobacco Abuse Counselling | Y |
| Mood | Depression | Y |
| Mood | Depression/depressive episode - mild, moderate or severe | Y |
| Mood | Chronic depression | Y |
| Mood | Reactive Depressive psychoses | Y |
| Mood | Single depressive disorder episode | Y |
| Mood | Recurrent depressive disorders | Y |
| Mood | Seasonal affective disorder (SAD) | Y |
| Mood | Ante-natal or puerperal depression | Y |
| Mood | Mixed anxiety and depressive disorder | Y |
| Mood | Depressive conduct disorder | Y |
| Mood | Other mood disorders | Y |
| Mood | Alcoholic jealousy | Y |
Cognition
| Sub-category | Variable type | Baseline |
|---|---|---|
| Cognitive Status | Parkinson's disease | Y |
| Cognitive Status | Alzheimer's disease -all cause | Y |
| Cognitive Status | Dementia | Y |
| Cognitive Status | Alcoholic dementia | Y |
| Cognitive Status | Senile dementia with depression | Y |
| Cognitive Status | Presenile dementia with depression | Y |
| Cognitive Status | Arteriosclerotic dementia with depression | Y |
| Cognitive Status | Dementia diagnosis date | Y |
| Cognitive Status | Dementia diagnosis flag | Y |
| Cognitive Status | Dementia with Lewy bodies diagnosis flag | Y |
| Cognitive Status | Frontotemporal dementia diagnosis flag | Y |
| Cognitive Status | Alzheimer's disease diagnosis flag | Y |
| Cognitive Status | Vascular dementia diagnosis flag | Y |
Lifestyle
| Sub-category | Variable type | Baseline |
|---|---|---|
| Alcohol | Very heavy drinker/alcoholism | Y |
| Smoking | Smoker/Tobacco user | Y |
| Smoking | Type cigarette/cigar/pipe | Y |
| Smoking | Amount | Y |
| Smoking | Cigarette pack-years | Y |
| Smoking | Former smoker -Type cigarette/cigar/pipe | Y |
| Smoking | Former smoker -Amount | Y |
| Smoking | Thinking about/Trying to give up smoking | Y |
| Smoking | Failed attempt to stop/restarted smoking | Y |
| Smoking | Total time smoked | Y |
| Substance Misuse | Various substances | Y |
| Substance Misuse | Has never misused drugs | Y |
Physical Examination
| Sub-category | Variable type | Baseline |
|---|---|---|
| Anthropometry | BMI | Y |
| Anthropometry | Weight (gain due to drugs) | Y |
Linkage Data
| Sub-category | Variable type | Baseline |
|---|---|---|
| Death register | Mortality (Status from Annual District Death Extract (ADDE)) | Y |
| HES | Hospital Admissions (Patient Episode Database for Wales (PEDW)) | Y |
| Primary Care | Welsh Longitudinal General Practice Dataset(WLGP) | Y |
Imaging
| Sub-category | Variable type | Baseline |
|---|---|---|
| BMD | DXA scan result osteoporotic - Heel | Y |
| BMD | DXA scan result osteoporotic - Forearm | Y |
| BMD | DXA scan result osteoporotic - Hip | Y |
| BMD | DXA scan result osteoporotic - Lumbar | Y |
| BMD | DEXA scan result osteoporotic - Femoral neck | Y |
| BMD | DXA scan T score -Heel | Y |
| BMD | DXA scan T score -Hip | Y |
| BMD | DXA scan T score - Lumbar Spine | Y |
| BMD | DEXA scan T score - Femoral neck | Y |
| BMD | QUI (Quantitative ultrasound) scan result osteoporotic - heel | Y |