PICNICS Cohort - DPUK Data Portal

Cohort Descriptives

Variable	Response
Cohort Name	Parkinsonism: Incidence and CogNItive heterogeneity in CambridgeShire
Cohort Acronym	PICNICS
DOI	Barker, R. (2017). PICNICS [Data set]. Dementias Platform UK. https://doi.org/10.48532/0370000
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
#Subjects at Baseline	290 subjects
Institution Name	University of Cambridge
Department Name	Clinical Neurosciences, John van Geest Centre for Brain Repair
City	Cambridge
Study/Database Website	http://thebarkerlab.co.uk/parkinsons-disease/
Principal Investigator (PI)	Prof Roger Barker
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 and 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	15/01/2008 00:00:00
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

Administration

Sub-category	Variable type	Variables generally collected
	Study ID	Y
	Age	Y
	Sex	Y

Sociodemographic

Sub-category	Variable type	Variables generally collected
	Age	Y
	Age at time of diagnosis of dementia	Y
	Age at last follow-up	Y
	Age at time of death	Y
	Sex	Y
	Ethnicity	Y
	Education	Y
	Employment status	Y

Physical Health Status

Sub-category	Variable type	Variables generally collected
	Cardiovascular disease data (From clinical records)	Y
	Myocardial infarction (From clinical records)	Y
	Cancer (From clinical records)	Y
	Diabetic Status (From clinical records)	Y

Healthcare Utilisation

Sub-category	Variable type	Variables generally collected
	Medication use	Y

Life Functionality

Sub-category	Variable type	Variables generally collected
	PDQ39 (PD specific) (Repeated collection)	Y
	UPDRS (PD specific) (Repeated collection)	Y
	Hoehn and Yahr (PD specific) (Repeated collection)	Y

Mental Health Status

Sub-category	Variable type	Variables generally collected
	Beck Depression Inventory	Y
	NPI	Y
	Apathy evaluation	Y

Cognitive Status

Sub-category	Variable type	Variables generally collected
	Parkinson's Disease	Y
	MCI	Y

Lifestyle

Sub-category	Variable type	Variables generally collected
	Smoking	Y
	Current smoking	Y
	Former smoking	Y

Physical Environment

Sub-category	Variable type	Variables generally collected
	Living situation	Y

Physical Examination

Sub-category	Variable type	Variables generally collected
	Neurological examination (assessed before onset of dementia)	Y
	Gait assessment (assessed before onset of dementia) (part of UPDRS)	Y

Linkage Data

Sub-category	Variable type	Variables generally collected
	Myocardial infarction (from clinical records)	Y
	Cancer (from clinical records)	Y
	Diabetic status (from clinical records)	Y

Biosample Assays

Sub-category	Variable type	Variables generally collected
	DNA (blood collected)	Y

Digital Phenotyping

Sub-category	Variable type	Variables generally collected
	Visual memory	Y
	Visuospatial Function	Y
	Associative Learning	Y
	Language	Y
	Verbal fluency	Y
	Working memory	Y
	Spatial Recognition Memory (SRM)	Y
	IQ data	Y
	NART	Y
	MMSE (Repeated collection)	Y
	Addenbrooke's Cognitive Exam (Repeated collection) - ACE-R.	Y

Genomics

Sub-category	Variable type	Variables generally collected
	Gene screening: MAPT	Y