Cohort Descriptives

Variable Response
Cohort Name The Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation-PD
Cohort Acronym ICICLE-PD
Study Overview The ICICLE-PD study aims to accurately characterise two independent cohorts of incident parkinsonism in Newcastle-Gateshead and Cambridgeshire. A key objective is to identify patients who develop PD Dementia and the factors that predict its evolution. From this information, a simplified panel of tests that can be used to predict PDD will be established. ICICLE-PD will therefore provide a platform for studies investigating agents designed to help treat this complication of PD. Participants were recruited between June 2009 and March 2012. Longitudinal follow up is on-going with assessments at 18 month intervals
#Subjects at Baseline 219 with PD and 99 controls (318 total)
Institution Name Newcastle University
Department Name Clinical Ageing Research Unit
City Newcastle
Study/Database Website

http://www.ncl.ac.uk/caru/research/project/2909

Principal Investigator (PI) Prof David Burn
Key Study References

Please see Literature section

Population Based Study? No
Family Based Study? No
Clinical based sample? Yes
Is there follow-up data available? Yes
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? Interviewers and Clinicians
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
Diagnosis based on review of existing clinical data Yes
Was diagnosis/primary outcomes made blind to exposure variables? No
How many times followed up? 5
Study start date 6/1/2009 12:00:00 AM
Study end date 12/12/2018 12:00:00 AM
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria Aged 18 plus. PD: Newly diagnosed PD from community and outpatient clinics in Newcastle upon Tyne/Gateshead and Cambridgeshire. Controls: age and sex matched controls from the same area.
Exclusion criteria PD: Atypical parkinsonian disorder, drug induced parkinsonism, vascular parkinsonism. No capacity to consent. Controls: Dementia, movement disorder, major psychiatric disorder, carer or spouses of PD participants

Administration

Variable type Variables generally collected
Study ID Y
Age Y
Sex Y

Sociodemographic

Variable type Variables generally collected
Age Y
Age at time of dementia diagnosis Y
Age at last follow-up Y
Age at time of death Y
Sex Y
Years of education Y
Employment status Y

Physical Health Status

Variable type Variables generally collected
Myocardial infarction Y
Medication use for CVD Y
Hypertension Y
Systolic/diastolic BP Y
Hypercholesterolemia Y
Cancer Y
Diabetic Status Y
Stroke data Y
Transient Ischemic Attack Y

Health Care Utilisation

Variable type Variables generally collected
Medication use Y

Life Functionality

Variable type Variables generally collected
PDQ39 (PD specific) (Repeated Collection) Y
UPDRS (PD specific) (Repeated collection) Y
MDS-UPDRS Revised Y
Hoehn and Yahr (PD specific) (Repeated collection) Y
Schwab and England (PD specific) (Repeated collection) Y

Psychological Status

Variable type Variables generally collected
PDQ39 Y
Quality of life of caregivers (CQOL) Y
Scale of Quality of Life of Care-Givers (SQLC) Y
Epworth and Pittsburgh sleep questionnaires Y
Objective sleep staging Y
Overnight sleep assessment as part of an ICICLE sleep substudy Y

Mental Health Status

Variable type Variables generally collected
Geriatric Depression Scale (GDS) Y
NPI Y

Cognitive Status

Variable type Variables generally collected
Parkinson's Disease Y
MCI Y
Subjective complaint Y

Lifestyle

Variable type Variables generally collected
Smoking Y
Pack years Y
Current smoking Y
Former smoking Y
Alcohol Y
Units per day/week vs weekend Y
Physical activity and exercise Y
Objective measures of activity (subgroup) Y
Coffee and Caffeine Y

Physical Environment

Variable type Variables generally collected
Living situation Y

Physical Examination

Variable type Variables generally collected
Blood pressure (assessed before onset of dementia) Y
Weight (assessed before onset of dementia) Y
Height (assessed before onset of dementia) Y
Neuroloigcal examination (assessed before onset of dementia) Y
Extrapyramidal symptoms (assessed before onset of dementia) Y
Heart Rate (assessed before onset of dementia) Y
ECG (assessed before onset of dementia) Y
Gait assessment (assessed before onset of dementia) Y
Opthalmic examination (assessed before onset of dementia) Y
Acuity (assessed before onset of dementia) Y
Visual fields (direct/indirect) (assessed before onset of dementia) Y
Colour vision (assessed before onset of dementia) Y
Transcranial magnetic stimulation substudy (short latency afferent inhibition) that investigated cholinergic function Y
BMI Y
Dyslipidemia Y
Blood lipids Y

Biosample Assays

Variable type Variables generally collected
Plasma (Repeated collection) Y
Serum (Repeated collection) Y
RNA (Repeated collection) Y
DNA (Repeated collection - Genetics and telomeres) Y
CSF collected (Subgroup) (Repeated collection) Y
mtDNA abnormalities Y

Digital Phenotyping

Variable type Variables generally collected
Visual memory Y
Visuospatial function Y
Attention Y
Reaction time Y
Associative learning Y
Language Y
Vigilance Y
Planning Y
IQ data Y
NART Y
MMSE (Repeated collection) Y
MoCA (Repeated collection) Y

Imaging

Variable type Variables generally collected
Structural T1 Y
Fluid attenuation inversion recovery (FLAIR) Y
Diffusion imaging (DTI/DWI) Y
f-MRI (task): Y
f-MRI (rest) Y
PET: FDG-PET for glucose Y

Genomics

Variable type Variables generally collected
APOE gene screening Y
MAPT gene screening Y
SNCA gene screening Y
LRRK2 gene screening Y

Metabolomics

Variable type Variables generally collected
Glucose (Repeated collection) Y
Lipids (Repeated collection) Y
Homocysteine (Repeated collection) Y
Folate (Repeated collection) Y