Cohort entry form - JPND Neurodegenerative Disease Research

Cohort name *

Acronym *

Cohort type *

Rare neurodegenerative condition

General population-based cohort

Neurodegenerative disease-specific cohort

Please select at least one.

Participant type *

At-risk diagnosis

Condition diagnosed

No diagnosis

Please select at least one.

Disease *

Alzheimer's disease

Dementia (unclassified)

Frontotemporal dementia

Huntington's disease

Lewy body disease

Mild cognitive impairment (MCI)

Motor neurone disease

Other NDs not listed

Parkinson's disease

Prion disease

Spinal muscular atrophy (SMA)

Spinocerebellar ataxia (SCA)

Subjective memory complaints (SMC) or subjective cognitive decline (SCD)

Type of dementia/ND not specified

Vascular dementia

Please select at least one.

Recruitment period *

Sample size at start *

0 to 4,999

10,000 to 14,999

10,000 to 19,999

100,000 to 499,999

15,000 to 19,999

20,000 to 49,999

5,000 to 9,999

50,000 to 99,999

500,000+

Please select at least one.

Gender *

Female

Male

Male and Female

Please select at least one.

Abstract *

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).

Country *

Institution name *

Website *

Principal Investigator *

Contact Email *

Contact telephone number *

Funders
(core support)

Brain related measures

Behaviour

Cognitive function

Mental health

Neurological

Functional rating

Caregiver

Individual physiological

Individual psychological

Anthropometric

Blood pressure

Height

Hip circumference

Waist circumference

Weight

Physical

Cardiovascular

Hearing and Vision

Musculoskeletal

Reproductive

Respiratory

Biological samples

Blood

Cardiovascular

Cerebral spinal fluid (CSF)

CSF biomarker data available

Hearing and vision

If CSF was collected is biomarker data available

Microbiome

Musculoskeletal

Other

Reproductive

Respiratory

Saliva

Urine

Genotyping

Gene screening

Brain imaging

Electroencephalogram (EEG)

Magnetic resonance imaging (MRI)

Magnetic resonance spectroscopy (MRS)

Magnetoencephalography (MEG)

Positron emission tomography (PET) - amyloid

Positron emission tomography (PET) fluorine18 flurodeoxyglucose (FDG)

Single photon emission computerised tomography (SPECT)

Lifestyle

Alcohol

Dietary habits

Physical activity

Smoking

Socio-economic

Education

Ethnic group

Family circumstances

Housing and accommodation

Income and employment

Income and finances

Informal support

Marital status

Martial status

Occupation and employment

Unpaid care

Health Service Utilisation

Formal health and social care service utilisation including private care

VARIABLES COLLECTED