Cohort Descriptives

Variable Response
Cohort name Cambridgeshire Parkinsons Incidence from GP to Neurologist
Cohort acronym CamPaIGN
General Study Overview The CamPaIGN study is a longitudinal study of the natural history of incident Parkinson's disease (PD) patients. The study was the first to prospectively track disease evolution from diagnosis in an unselected population-representative incident cohort, and has focused primarily on the evolution of cognitive dysfunction in PD, reporting on both clinical and genetic predictors of dementia. Other outcomes of interest in this study include development of dyskinesias, development of postural instability, and death.
Number of subjects at baseline 142
Institution name University of Cambridge
Department name Clinical Neurosciences, John van Geest Centre for Brain Repair
City Cambridge
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 Dr 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 331160
Technical Contact/Data manager (TC): Name Dr Caroline Williams-Gray
TC: Address John van Geest Centre for Brain Repair, E.D. Adrian Building, Forvie Site, Robinson Way, Cambridge CB2 0PY UK
TC: email

chm27@cam.ac.uk

TC: phone +44 (0)1223 331160
Key study references

Open literature list

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: Consultant neurologist and clinical research fellow.
Does this take place in participants' homes or at a central location? Home
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 No
How many times followed up? 5
How regular is follow-up? Every 2-3 years
Every 2-3 years: Every 2 years.
Study start date 2000-12-01
Is study ongoing? Yes
Is study still recruiting? No
Inclusion criteria Idiopathic PD as identified using UKPDS Brain Bank criteria.

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
Extrapyramidal symptoms Data available
Gait assessment Data available
Comments: As part of UPDRS
Specify any others Motor phenotype was classified on the basis of the ratio of ‘tremor’ to ‘postural instability and gait disturbance’ scores derived from the motor subsection of the UPDRS, with a ratio of ≥ 1.5 indicating a ‘tremor dominant’ phenotype and a ratio of < 1.5 indicating a ‘non tremor-dominant’ phenotype.
Medical conditions
Cardiovascular disease data Yes: From clinical history.
Myocardial infarction Data available
Comments: From clinical history.
Hypertension Data available
Hypercholesterolemia No
Virus testing No data available
Olfactory sensitivity No
Medication use Yes
Drug coding system: Levodopa equivalent dose calculated.
Cancer Data available
Comments: From clinical history.
Diabetic Status Data available
Comments: From clinical history.

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Visual Memory Data available
Data available
N (estimate) : 142
List all tests: Pattern Recognition Memory
Computerised: CANTAB PRM and CANTAB PAL (see also Associative Learning)
Visuospatial Function Data available
Data available
N (estimate): 142
List all tests: Pentagon Copying Test
Pen and paper
Associative learning Data available
Data available
N (estimate): 142
List all tests: Paired Associates Learning
Computerised: CANTAB PAL
Language Data available
Data available
N (estimate): 142
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): 142
List all tests: CANTAB Stockings of Cambridge One Touch (OTS) (Tower of London), phonemic fluency, CANTAB Spatial Recognition Memory (SRM)
Pen and paper: phonemic fluency
Computerised: CANTAB OTS and CANTAB SRM
Planning Data available
Data available
N (estimate): 142
List all tests: One Touch Stockings of Cambridge (OTS)
Computerised: CANTAB
IQ data available? Yes
NART Yes
Cognitive background? Yes
Years of education Yes
Level of education No
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA No
ADAS-Cog No
Addenbrooke's Cognitive Exam No
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 Yes
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 Schwab and England scale of functional independence (as part of the 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? Yes
Transient Ischemic Attack Yes
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 No
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
Do you use an imaging data management system (e.g. XNAT or LORIS)? No

Genetics

Variable Response
Overview
N Whole genome sequenced No
Gene screening
APOE Yes
Estimated N: 110
TREM2 No
APP No
PSEN1 No
PSEN2 No
GRN No
MAPT Yes
Estimated N: 11-
C9ORF72 No
VCP No
CHMP2B No
TDP-43 No
PRNP No
SNCA Yes
Estimated N: 110
LRRK2 No
PINK1 No
PARK2 No
PARK7 No
NOTCH3 No
CST3 No
TTR No
GSN No
ITM2B No
HTT No
NPC1 No
NPC2 No

Biological samples

Variable Response
Blood collected Yes
Plasma No
Serum No
RNA No
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
Autopsy No
Saliva
Saliva collected No
Cortisol No
CSF
CSF collected No
mtDNA abnormalities No
Oxidative stress 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
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? No
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? No
Does the cohort include participants who lack capacity? Yes
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? Study neurologist.
Do procedures exist for the disclosure of clinically relevant information identified as a direct focus of the study? (e.g. a diagnosis of dementia) Yes
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? No

Data Management

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