Cohort Directory Information

Cohort Directory information Inclusion criteria  More than 1,000 participants for general population-based cohorts  More than 200 participants for neurodegenerative disease specific cohorts unless it relates to a rare neurodegenerative condition

Abstract Profile Please provide a short description of the cohort, its key aims and if there was any cohort refreshment. Please include information on the number and frequency of data collection events, type of follow up (e.g. solely through record linkage) and cohort distinguishing features (e.g. availability of information on childhood infection or geographic isolated area).

Cohort name and acronym: Cohort type Choose an item. Participant type Choose an item. Institute name: Country: PI: Profile: Recruitment Period: Sample size at start or planned sample size if still recruiting: Estimated current sample size: Age at recruitment:

Abstract

Website: Contact details: Funders (core support): Gender: Variables collected (Abbreviations list at foot of table) Y/N Diagnosis Alzheimer’s disease Vascular dementia Frontotemporal dementia Motor neurone disease Prion disease Parkinson’s disease Lewy Body disease Huntington’s disease Spinocerebellar ataxia (SCA) Spinal muscular atrophy (SMA) Mild cognitive impairment (MCI) Subjective memory complaints (SMC) or subjective cognitive decline (SCD) (e.g. using Jessen Criteria) Other/rarer dementias/NDs not listed Type of dementia/ND not specified Cognitive Mental health (e.g. GAD-7, GDS, STAI) Cognitive function (e.g. MMSE, CAMCOG, MOCA, ADAS-Cog, FCSRT, 15WT, TRAILS, 7-min screen, JLO, HVL, LNS, SDMT) Behaviour (e.g. Behave-AD, aggression scale, QUIP) Neurological (e.g. data collection regarding strokes, traumatic brain injuries, epilepsy) Functional rating Individual Psychological (e.g. QUALIDEM, CSDD, Lawton– PSMS & IADL, positive psychology) Physiological (e.g. UPDRS, MDS-UPDRS, UMSARS, PASE, UPSIT, RBDSQ, SCOPA-AUT, SARA) Caregiver (e.g. HADS, EQ-5D, (S)SCQ) Anthropometric Height Weight Waist circumference Hip circumference Blood pressure Physical Cardiovascular Respiratory Musculoskeletal Hearing and vision Reproductive Biological Blood samples Urine Saliva Microbiome Cerebral spinal fluid (CSF) If CSF was collected is biomarker data available Other (including buccal cell, placenta, fibroblasts, brain, muscle, teeth, hair) Genotyping Gene screening Brain imaging Magnetic resonance imaging (MRI) (e.g. Structural T1, FLAIR, DTI/DWI, F-MRI (task/rest)) Magnetic resonance spectroscopy (MRS) Positron emission tomography (PET) – fluorine–18 flurodeoxyglucose (FDG) Positron emission tomography (PET) - amyloid Magnetoencephalography (MEG) Electroencephalogram (EEG) Single photon emission computerised tomography (SPECT) Brain banking Consent for brain donation Lifestyle Smoking Physical activity Dietary habits Alcohol Socio-economic Occupation and employment Income and finances Family circumstances Housing and accommodation Education Ethnic group Marital status Informal support (e.g. social networks and contacts) Unpaid care (e.g. friends or family) Health service Formal health and social care service utilisation – including utilisation private care (e.g. record of scans, appointments and any formal interaction with the health service)

Abbreviations list

15WT – 15 Words test 7-min screen – 7 Minute screen ADAS-Cog - Alzheimer’s disease assessment scale–Cognitive Behave-AD – Behavioural pathology in Alzheimer’s disease CSDD – Cornell scale for depression in dementia CAMCOG – Cambridge cognition examination DTI/DWI – Diffusion tensor imaging/ diffusion-weighted imaging EQ-5D – EuroQol-5D FCSRT – Free and cued selective reminding test FLAIR - Fluid attenuation inversion recovery GAD-7 - Generalised anxiety disorder-7 GDS - Geriatric depression scale, HADS – Hamilton depression rating scale HVLT - Hopkins verbal learning JLO - Judgment of line orientation Lawton–IADL – Lawton–instrumental activities of daily living scale Lawton–PSMS – Lawton-physical self-maintenance scale LNS - Letter-number sequencing MDS-UPDRS – Movement disorders society unified Parkinson’s disease rating scale MMSE - Mini mental state examination MOCA - Montreal cognitive assessment ND - Neurodegenerative disease PASE – Physical activity scale for the elderly QUIP - Questionnaire for impulsive-compulsive disorders RBDSQ – REM sleep behaviour disorder screening questionnaire SARA – Scale of the assessment and rating of ataxia SCOPA-AUT – Scales for outcomes in Parkinson’s disease-autonomic SCQ (27) – Sense of competence scale questionnaire SSCQ (7) – Short sense of competence scale questionnaire STAI - State-trait anxiety index SDMT - Symbol modalities test TRAILS – Trail making test UMSARS – Unified multiple system atrophy rating UPDRS – Unified Parkinson’s disease rating scale UPSIT – University of Pennsylvania smell identification test