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 parkinsonsim 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. 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

Principal Investigator (PI) Professor 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
# Subjects at Follow-up
Study start date 1/6/2009 12:00:00 AM
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria PD: Newly diagnosed PD based in Newcastle upon Tyne/Gateshead and Cambridgeshire. Control: Aged 45+, no known cerebral disease/abnormality, ability to travel for scans, English as first language or fluent, ability to move without walking aid, no cognitive impairment, movement disorder or current significant mood disorder.
Exclusion criteria PD: Suspected parkinsonism prior to onset of study, no working knowledge of English, significant memory impairment at presentation, no capacity to consent, DLB. Drug-induced parkinsonism, vascular parkinsonism, progressive supranuclear palsy, multiple system atrophy, corticolbasal degeneration. Control: MMSE <24 or dementia, significant vascular co-morbidity, no capacity to consent.


Variable type
Participant ID
Sex Of Participant
Date Of First Assessment
Age At First Assessment
Newcastle/Cambridge Group


Sub-category Variable type Baseline
Education Number of years of completed education Y

Physical Health Status

Sub-category Variable type Baseline
Cardiothoracic Ischaemic heart disease Y
Cardiothoracic Hypertension Y
ENT Smell or taste Y
Eyes Double vision Y
General Health Non-Motor Symptom assessment scale for Parkinson's Disease (NMS-Quest) Y
General Health Hypercholesterolaemia Y
General Health Diabetes (Type I/II) Y
Neurological Stroke Y
Pain Pain location and duration Y

Healthcare Utilisation

Sub-category Variable type Baseline
Medications Frequency and dosages Y
Medications Medication name Y
Medications Parkinson's specific medication usage Y
Medications Other medication Y
Medications Levodopa equivalent daily dose Y
Medications Dopamine agonist use Y

Life Functionality

Sub-category Variable type Baseline
Daily Living Unified Parkinson's Disease Rating Scale (UPDRS) - part 2 Y

Psychological Status

Sub-category Variable type Baseline
Sleep Non-Motor Symptom assessment scale for Parkinson's Disease (NMS-Quest) - Sleep specific questions Y
Sleep Epworth Sleepiness Scale Y
Sleep Pittsberg Sleep Quality Index Y

Mental Health Status

Sub-category Variable type Baseline
Disorders Non-Motor Symptom assessment scale for Parkinson's Disease (NMS-Quest) - Psychosis specific questions Y
Mood Non-Motor Symptom assessment scale for Parkinson's Disease (NMS-Quest) - Mood specific questions Y
Mood Geriatric Depression Scale (15 item version) Y

Cognitive Status

Sub-category Variable type Baseline
Parkinson's Number of days/months since Parkinson's diagnosis Y
Parkinson's Hoehn and Yahr scale, PD severity score Y
Parkinson's Duration of PD symptoms in months Y


Sub-category Variable type Baseline
Alcohol Number of units of alcohol consumed per week Y
Sexual Sexual activity and function Y
Smoking Current smoking status Y

Physical Examination

Sub-category Variable type Baseline
Anthropometry Height in m Y
Anthropometry Weight in kg Y
Anthropometry Body Mass Index (BMI) Y
Mobility Dyskinesias present? Y
Mobility Movement Disorder Society Unified Parkinson's disease rating scale Part III (motor severity score) Y
Mobility UPDRS part III movement tests Y
Mobility Motor phenotype Y

Biosample Assays

Sub-category Variable type Baseline
Biochemistry EGF amino acids/base pairs Y
Biochemistry COMT amino acids/base pairs Y
Biochemistry LRRK2 amino acids/base pairs Y
Biochemistry BuChE amino acids/base pairs Y

Digital Phenotyping

Sub-category Variable type Baseline
Cognitive Performance Various spatial/paired memory tests, from CANTAB Y
Cognitive Performance Digit vigilance tests, from Cognitive Drug Research Battery Y
Cognitive Performance Alternative pentagon score Y
Cognitive Performance Reaction time tests, from Cognitive Drug Research Battery Y
Cognitive Performance Verbal fluency tests (phonemic and semantic) Y
Cognitive Performance National Adult Reading Test score Y
Cognitive Performance One Touch Stockings test from CANTAB Y
Global Cognition Mini Mental State Examination score Y
Global Cognition Montreal Cognitive Assessment score Y


Sub-category Variable type Baseline
MRI T1-weighted MRI Y


Sub-category Variable type Baseline
APOE APOE base pairs Y
Genotyping SNCA base pairs Y
Genotyping MAPT base pairs/genotype Y