Table 1.
Item | Data recorded |
Demographic information | |
Age | Age at assessment (years) |
Sex | Biological sex (male/female/non-binary) |
Level of education | Finished formal education (years) |
Occupation | Occupation (free text) |
Age retired | Age at retirement (years) |
Marital status | Non-married/married/divorced/widowed |
Driving status | Currently driving/ceased driving/never drove |
Medical history | |
Prior stroke/transient ischaemic attack | Yes/no |
Recurrent syncope | Yes/no |
Diabetes mellitus5 | History of/on diabetes mellitus medication; yes/no |
Hypertension | History of/on antihypertensive medication; yes/no |
Hypercholesterolaemia | History of/on antilipidaemic medication; yes/no |
Ischaemic heart disease | Yes/no |
Alcohol excess | Yes/no |
Epilepsy | History of/on antiepileptic medication; yes/no |
Concussion/prior head injury | Yes/no |
History of malignancy | Yes/no |
Previous anxiety | History of/on anxiolytic medication; yes/no |
Previous depression | History of/on antidepressant medication; yes/no |
Hearing impairment | Yes/no |
Vision impairment | Yes/no |
Smoking status | Yes/no/previous smoker |
Family history | Memory difficulties/dementia/Alzheimer’s disease/in a first-degree relative; yes/no |
Regular medications | Medications list; coded using anatomical therapeutic classification system |
Anosmia | Yes/no |
Cognitive symptoms at presentation | |
Symptom duration | Duration of symptoms (in months) |
Episodic memory | Each item recorded as yes/no indicating recent change at time of assessment |
| |
Autobiographical memory | Recorded as yes/no indicating recent change at time of assessment |
| |
Language | Each item recorded as yes/no indicating recent change at time of assessment |
| |
Recognition | Each item recorded as yes/no indicating recent change at time of assessment |
| |
Informant concerns | Each item recorded as yes/no indicating recent change at time of assessment |
| |
Cognitive assessment | |
RBANS | Repeatable Battery for Assessment of Neuropsychological Status Unadjusted (Raw) score and centile score computed (based on age/education) Normalisation using Duff norms |
| |
ACE-III | Addenbrooke’s Cognitive Assessment if unable to complete RBANS Domain and total scores recorded |
| |
CDR | Clinical Dementia Rating Scale Global score and sum of boxes recorded |
| |
FAB | Frontal Assessment Battery Total score recorded |
AD8 administered to informant | Ascertain-Dementia 8 Questionnaire (scored from 8) |
CBI-R | Cambridge Behavioural Inventory-Revised |
Mood and anxiety assessment | |
HADS-Depression HADS-Anxiety |
Hospital Anxiety and Depression Scales Total Score Recorded Probable Depression/Anxiety (Score >10) Recorded |
Further clinical assessment | |
PSQI | Pittsburgh Sleep Quality Index (0–21) |
TUG | Timed-Up-and-Go Test; Time to Complete in seconds recorded |
CFS | Clinical Frailty Scale to Assess Frailty |
MNA | Mini Nutritional Assessment Score (0–7: malnourished; 8–11: at risk and 12–14: normal) |
Neuroimaging | |
MRI brain | Adjudicated at MDT consensus meeting by a panel of more than two geriatricians/neurologists
|
| |
CT brain results | CT brain results if performed; free text |
FDG-PET results | FDG-PET results if performed; free text |
DAT results | DAT scan results if performed; free text |
Blood test results | |
Haematology results | Any abnormalities detected; yes/no; recorded in standard units as per hospital laboratory |
| |
Biochemistry and other results | Any abnormalities detected; yes/no; recorded in standard units as per hospital laboratory |
| |
Cerebrospinal fluid results | |
Diagnostic lumbar puncture results | All recorded as pg/mL using Roche Elecsys electrochemiluminesence assay |
| |
Working (consensus meeting) diagnosis | |
Working diagnosis at weekly MDT meeting | Free text |
Final (biobank) diagnosis | |
Final diagnosis adjudicated following all investigations | Functional status |
| |
Aetiological diagnosis | |
|
ACE, Addenbrooke’s Cognitive Assessment; ALS, amyotrophic lateral sclerosis; bvFTD, behavioural variant FTD; CBS, corticobasal syndrome; DAT, dopamine transporter scan; FDG, fluorodeoxyglucose; FTD, frontotemporal dementia; LPA, logopenic variant aphasia; MDT, multidisciplinary team; MTA, medial temporal atrophy; nfvPPA, non-fluent agrammatic PPA; PCA, posterior cortical atrophy; PET, positron emission tomography; PPA, primary progressive aphasia; PSP, progressive supranuclear palsy; 4R Tau, 4 repeat tauopathy; svPPA, semantic variant PPA.