Cohort Descriptives

Variable Response
Cohort name Parkinsonism: Incidence and CogNItive heterogeneity in CambridgeShire
Cohort acronym PICNICS
General Study Overview The PICNICS study is an observational incidence study tracking the progression of patients with Parkinson’s disease over several years to better understand how the disease behaves over time, and establish the pattern of evolution of subtypes of Parkinson’s disease. Understanding differences between subtypes and what drives them will inform development of stratified therapies. The study recruited patients with Parkinson’s disease between 2008 and 2013, and is following them up every 18 months with clinical assessments, cognitive assessments and biological sampling.
Number of subjects at baseline 290
Institution name University of Cambridge
Department name Clinical Neurosciences, John van Geest Centre for Brain Repair
City Cambridge
Study or database website

http://thebarkerlab.co.uk/parkinsons-disease/

Principal Investigator (PI): Name Prof Roger Barker
PI: Address John van Geest Centre for Brain Repair, E.D. Adrian Building, Forvie Site, Robinson Way, Cambridge CB2 0PY UK
PI: email

rab46@cam.ac.uk

PI: phone +44 (0)1223 331160
Administrative Contact (AC): Name Caroline Williams-Gray
AC: Address John van Geest Centre for Brain Repair, E.D. Adrian Building, Forvie Site, Robinson Way, Cambridge CB2 0PY UK
AC: email Chm27@cam.ac.uk
AC: phone +44 (0)1223 337733
Population based study? Yes
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
Clinicians
Does this take place in participants' homes or at a central location? Central: Assessments can be done at home if travel is difficult for the participant
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
Study start date 2008-01-15
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria Adults over 18
New onset Parkinson's disease meeting UKPDS Brain Bank Criteria
Resident in Cambridgeshire
Exclusion criteria Dementia diagnosis at baseline

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia Yes
Age at last follow-up Yes
Age at time of death Yes
Sex Yes
Ethnicity Yes
Education Yes
Physical examinations
Any physical examination performed? Yes
Neurological examination Data available
Assessed before onset of dementia
Gait assessment Data available
Assessed before onset of dementia
Comments: As part of UPDRS
Medical conditions
Cardiovascular disease data Yes: From clinical records
Myocardial infarction Data available
Comments: From clinical records
Hypercholesterolemia No
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Drug coding system: Levodopa equivalent dose calculated.
Cancer Comments: May be available from clinical records
Diabetic Status Comments: May be available from clinical records

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available
N (estimate) : 290
List all tests: Pattern Recognition Memory
Computerised: CANTAB PRM and CANTAB PAL (see also Associative Learning)
Visuospatial Function Data available
Data available
N (estimate): 290
List all tests: Pentagon Copying Test, Design Organisation Test (DOT, Killgore et al., 2005)
Pen and paper: DOT and Pentagon copying
Computerised
Associative learning Data available
Data available
N (estimate): 280
List all tests: Paired Associates Learning
Computerised: CANTAB PAL
Language Data available
Data available
N (estimate): 280
List all tests: Verbal fluency: semantic (90seconds) and phonemic (F, A, S, one minute each)
Pen and paper
Working memory Data available
Data available
N (estimate): 290
List all tests: Stockings of Cambridge One Touch (OTS) (Tower of London), phonemic fluency, Spatial Recognition Memory (SRM)
Pen and paper: phonemic fluency
Computerised: CANTAB OTS, CANTAB SRM
IQ data available? Yes
NART Yes
Cognitive background? Yes
Standard dementia global cognition scales? Yes
MMSE Yes
Repeated Collection
Comments: Pentagon tests from MMSE as a test of constructional praxis
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam Yes
Repeated Collection
Comments: ACE-R
3MS No
GPCOG No

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia No
Lewy Body Disease No
Huntingtons Disease No
Parkinsons Disease Yes
Frontotemporal dementia No
Vascular dementia No
MCI Yes
Subjective complaint No
Functional rating scales
Any information on dementia rating collected? Yes
ADCS-ADL No
ADCS-ADL-MCI No
Blessed Dementia Scale No
Clinical dementia rating scale (CDR) No
Complex Activities of Daily Living No
Dependence Scale No
Functional Assessment Questionniare (FAQ) No
FAST No
Global Deterioration Scale (GDS) No
Katz ADL No
Lawton IADL No
PDQ39 (PD specific) Yes
Repeated Collection
UPDRS (PD specific) Yes
Repeated Collection
Hoehn and Yahr (PD specific) Yes
Repeated Collection
Schwab and England (PD specific) Yes
Repeated Collection
UHDRS (HD specific) No
Any information on subjective complaints collected? No
Any neuropsychiatric rating scale administered? Yes
Aggression Scale No
Beck Depression Inventory Yes
Behave-AD No
Center for Epidemiologic Studies Depression scale (CES-D) No
Connor-Davidson Resilience Scale No
Cornell depression Scale No
Geriatric Depression Scale (GDS) No
Hamilton depression rating scale (HDRS) No
Montgomery-Asberg depression scale (MADRS) No
NPI Yes
NPI-Q No
Speilberger State Anxiety Scale No
Hospital anxiety depression scale/psychiatry (HADS) No
Any Quality of Life Data Colllected? Yes
Quality of Life-Alzheimers Disease (QOL-AD) No
Dementia Quality of Life Instrument (DEMQOL) No
Discomfort Scale for Dementia of Alzheimers Type (DS-DAT) No
Progressive Deterioration Scale (PDS) No
Quality of Life in Late-Stage Dementia Scale (QUALID) No
Bedfords Alzheimers Nursing Severity Scale(BANS-S) No
EQ-5DVAS No
Short Form (SF) 36 No
Health Utilities Index 1, 2 or 3 No
Specify any other quality of life scales Contained within UPDRS
Any information on Caregivers and Caregiving Collected? No
Health service utilisation
Any Health Resource Utilisation Collected ? No
Hospital utilisation No
Other neurological or psychiatric measurements? Yes
Any stroke data? No
Stroke type No
Transient Ischemic Attack No
Carotid plaques No
Any head trauma data? No
Sports, soccer and boxing No
BISQ or equivalent No
EEG No
Psychiatric evaluations Yes
CESD scale (depression) No
Personality evaluation No
Apathy evaluation Yes
Anxiety measure No
Resilience evaluation No

Imaging

Variable Response
Structural T1 Not acquired
Not acquired
Fluid attenuation inversion recovery (FLAIR) Not acquired
Not acquired
Diffusion imaging (DTI/DWI) Not acquired
Not acquired
f-MRI (task) Not acquired
Not acquired
f-MRI (rest) Not acquired
Not acquired
PET Not acquired
Not acquired
SPECT Not acquired
Not acquired
MEG Not acquired
Not acquired
In vivo Spectroscopy Not acquired
Not acquired

Genetics

Variable Response
Overview
N Whole genome sequenced No
Gene screening
MAPT Yes

Biological samples

Variable Response
Blood collected Yes
DNA Yes
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
Urine collection
Urine No
Autopsy data
Saliva
Saliva collected No
Cortisol No
CSF
CSF collected No
mtDNA abnormalities No
Oxidative stress No
synuclein No

Brain donation

Variable Response
Is brain donation part of the existing protocol? Yes
Are information sheets made available to representative or consultees? Yes
Are retrospective interviews carried out after the participant's death? No
Is there a procedure for declining donation/failed recruitment/project termination? Yes
Has an actuarial analysis been completed? No

Lifestyle

Variable Response
Smoking Yes
Current smoking Data available
Former smoking Data available
Drugs of abuse assessment
Obesity and associated risk factors
Physical activity and exercise No
Diet No
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Sleep assessment

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? No
Do existing mechanisms for consulting/involving participants exist? N/A
If so, does this happen on an ongoing or an ad hoc basis? N/A
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? N/A
Is there a process in place for participants who lose capacity? Yes
Do participants provide contact information for a person to act as a potential consultee? Yes
Disclosure
Do procedures exist for the disclosure of incidental findings? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Clinically relevant findings.
Who is responsible for disclosing incidental findings? The study doctor.
Recruitment
How was the cohort recruited (NHS or not, primary or secondary care)? NHS Primary and Secondary Care.
Does the study involve ongoing connections with participants' own doctors (e.g. GPs)? Yes
Consent and recontact
Is there consent for recontact? Yes

Data Management

Variable Response
Consent for linkage to routine data
Which parts of the UK are represented by participants in your cohort? England
England