Cohort Descriptives

Variable Response
Cohort name Oxford Parkinson's Disease Centre Discovery Cohort
Cohort acronym OPDC Discovery
General Study Overview Oxford Parkinson Disease Center (OPDC) was established in 2009 with funding from the Parkinson UK Monument Discovery Award and brings together world-leaders in clinical neurology, neuroepidemiology, neuroimaging, proteomics, genomics, molecular genetics, transgenic PD models, neuropharmacology, neurophysiology and neuropathology. The OPDC Discovery cohort is a prospective, longitudinal study that has recruited patients with early idiopathic Parkinson Disease, healthy controls and participants at risk of PD. The study also includes participants with REM Sleep Behaviour Disorder.
Number of subjects at baseline 1,082 PD, controls 297, 106 PD relatives, 104 RBD
Institution name University of Oxford
Department name Oxford Parkinson's Disease Centre
City Oxford
Study or database website

http://opdc.medsci.ox.ac.uk/home

Principal Investigator (PI): Name Dr Michele Hu
PI: Address Oxford University Department of Clinical Neurology, West Wing Level 3, John Radcliffe Hospital, Headley Way, Oxford, OX3 9DU
PI: email

michele.hu@ndcn.ox.ac.uk

PI: phone +44 (0)1865 231 295
Administrative Contact (AC): Name Dr Michele Hu
AC: Address Oxford University Department of Clinical Neurology, West Wing Level 3, John Radcliffe Hospital, Headley Way, Oxford, OX3 9DU
AC: email Michele.hu@ndcn.ox.ac.uk
AC: phone +44 (0)1865 231 295
Key study references

Open literature list

Population based study? No
Family based study? Yes
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? Clinicians
Does this take place in participants' homes or at a central location? Central
Do participants take part individually or are families/partners involved? Family
Dementia cases ascertained as part of study: No
Diagnosis based on review of existing clinical data No
Was diagnosis/primary outcomes made blind to exposure variables? Yes
Study start date 2009-01-01
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Participant is willing and able to give informed consent for participation in the study. Should be fluent in English.
Male or Female, aged 18 years or above.
For patients: there must be a clear diagnosis of PD made by a Neurologist with expertise in this disease.
No evidence of significant cognitive impairment
For controls: must be age and sex strata matched.
At-risk individuals will be first degree relatives of PD patients
Exclusion criteria The participant may not enter the study if ANY of the following apply:
Inability to provide informed consent or withdrawal of consent at any stage.
Medical or psychiatric illness that would interfere with completing initial or follow-up assessments
Severe mental impairment due to dementia or psychosis
Pregnancy
Contraindication to lumbar puncture e.g. bleeding diathesis, epidural abscess, suspicion of raised intracranial pressure.
Contraindication to MRI e.g. incompatible metal foreign body or suspicion of such.
Contraindication to saccadometry e.g. double vision or serious eye disease

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
Blood pressure Data available
Assessed before onset of dementia
Weight Data available
Assessed before onset of dementia
Height Data available
Assessed before onset of dementia
Neurological examination Data available
Assessed before onset of dementia
ECG Data available
Assessed before onset of dementia
Comments: Very small subgroup
Respiratory examination Data available
Assessed before onset of dementia
Comments: Very small subgroup
Spirometry Data available
Assessed before onset of dementia
Comments: Very small subgroup
Gait assessment Data available
Assessed before onset of dementia
Comments: Freezing of Gait (FOG) Questionnaire. Participants were also assessed on a 3 metre timed Get up and Go test.
Opthalmic examination Data available
Assessed before onset of dementia
Comments: Saccadic eye movement measured as part of the scanning protocol (see Imaging)
Specify any others Purdue Pegboard test.
Flamingo Balance Test and the hand tapping/manual evoked reaction time task.
An eye movement tracking (saccadometry) has been carried out in around 250 PD subjects at baseline, and around 100 PD subjects longitudinally.
Medical conditions
Cardiovascular disease data Yes
Medication use for CVD Data available
Hypertension Data available
Systolic/diastolic BP Data available
Hypotension Data available
Hypercholesterolemia Yes
Virus testing No data available
Olfactory sensitivity Yes
Medication use Yes
Cancer Data available

Cognitive Outcomes

Variable Response
Any domain-specific cognitive test performed? Yes
Language Data available
Data available
N (estimate): 1,082 PD, controls 297, 106 PD relatives, 104 RBD
List all tests: Semantic Fluency (animals) and Phonemic Fluency (FAS) at every visit in PD, RBD, PD relatives.
Pen and paper
IQ data available? Yes
NART Yes
IQ other (list) IQ-CODE Short Questionnaire
Cognitive background? Yes
Years of education Yes
Level of education No
Parental education No
Standard dementia global cognition scales? Yes
MMSE Yes
MoCA Yes
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 No
Subjective complaint No
Dementia diagnosis (Other comments) 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) No
UPDRS (PD specific) Yes
Hoehn and Yahr (PD specific) Yes
Schwab and England (PD specific) Yes
UHDRS (HD specific) No
Specify any other dementia rating scales Mini Environmental Risk Questionnaire for PD Baseline (MERQ-PD B).
Any information on subjective complaints collected? No
Any neuropsychiatric rating scale administered? Yes
Aggression Scale Yes
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) Yes
Specify any other scales Yes
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 Yes
Short Form (SF) 36 No
Health Utilities Index 1, 2 or 3 No
Any information on Caregivers and Caregiving Collected? No
Caregivers for Alzheimers disease Problems Scale (CAPS) No
Community Dementia Quality of Life Profile (CDQLP) No
COQoL-AD No
Dementia Management Strategies Scale (DMSS) No
Caregiver Activity Survey (CAS) No
Quality of life of caregivers (CQOL) No
Health service utilisation
Any Health Resource Utilisation Collected ? No
Hospital utilisation No
Prescription Medicine Cost No
Over the Counter Drug Costs No
Nursing Home Costs No
Costs of Visits to Specialists (out-patient) No
Costs of Home-Care No
Admission to nursing home No
Admission to home care No
Day care at nursing home No
Day care at home for elderly No
Home care- domestic No
Home care- personal care No
Home care- nursing No
Physical therapist No
Care of community mental health team No
Permanent stay at nursing home No
Informal ADL care No
Informal iADL care No
Days of work absence if having a paid job No
Other neurological or psychiatric measurements? Yes
Any stroke data? Yes
Stroke type 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 Yes
Personality evaluation comments Yes: Big Five Inventory of Personality
Apathy evaluation No
Anxiety measure Yes
Resilience evaluation No

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? DICOM
Structural T1 Acquired
Acquired: For each subject, T1-weighted images were obtained using a 3D Magnetization Prepared-Rapid Acquisition Gradient Echo (MP-RAGE) sequence (192 axial slices, flip angle 8°, 1x1x1 mm3 voxel size, TE/TR/TI = 4.7ms/2040ms/900ms). Acquisition time for the MP-RAGE was 6 minutes.
N controls: 34 baseline (no follow up planned)
N patients: iPD = 75 baseline, 5 follow up, RBD = 27 baseline, 2 follow up, LRRK2 mutation participants = 5, aGBA mutations participants = 9, GBA mutation participants = 8
Acquisition period: 2010-2015
Manufacturer: Siemens
Model: Trio
Scanner N: Single
Field strength: 3T
Fluid attenuation inversion recovery (FLAIR) Not acquired
Not acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired: For DWI, diffusion was measured along 60 isotropically distributed directions (SE-EPI, 65 axial slices, isotropic voxel size 2 mm, TE 94 ms, TR 9,300 ms, b-value 1,000 seconds · mm−2).
N controls: 34 baseline (no follow up planned)
N patients: iPD = 75 baseline, 5 follow up, RBD = 27 baseline, 2 follow up, LRRK2 mutation participants = 5, aGBA mutations participants = 9, GBA mutation participants = 8
Acquisition period: 2010-2015
Manufacturer: Siemens
Model: Trio
Scanner N: Single
Field strengths: 3T
f-MRI (task) Not acquired
Not acquired
f-MRI (rest) Acquired
Acquired: Functional images were acquired using gradient echo planar imaging (EPI) (TR=2000ms, TE=28ms, flip angle=89°, resolution=3×3×3.5mm). Thirty-four axial slices were acquired per volume, covering both hemispheres with incomplete coverage of the cerebellum, 180 repetitions were acquired in 6 min. Participants were instructed to remain still and awake with their eyes open.
N controls: 34 baseline (no follow up planned)
Acquisition period: 2010-2015
Manufacturer: Siemens
Model: Trio
Scanner N: Single
Field strength: 3T
PET Not acquired
Not acquired
SPECT Not acquired
Not acquired
MEG Not acquired
Not acquired
In vivo Spectroscopy Not acquired
Not acquired
Other (please specify) Field maps were also acquired to reduce EPI distortion due to magnetic field inhomogeneity (TR=488ms, TE=5.19ms and 7.65ms).
Do you use an imaging data management system (e.g. XNAT or LORIS)? Yes
If yes, which system do you use? XNAT
Primary contact for the technical aspects of the imaging data Prof Claire Mackay

Genetics

Variable Response
Overview
ExomeChip versions Illumina Infinium Human Exome 12: Illumina HumanCoreExome-12 v1.1
N Whole Exome sequenced Cases N
Cases N: Illumina HumanCoreExome-12 v1.1: comprising 719 PD cases, 261 controls, 101 at-risk and 64 RBD.
Controls N: 261
Exome/Genome sequencing broad platform categories Illumina
N Whole genome sequenced No
Gene screening
MAPT Yes

Biological samples

Variable Response
Blood collected Yes
Plasma Yes
Comments: Not stored
Serum Yes
RNA No
DNA Yes
Abeta 1-40 No
Abeta 1-42 No
Abeta x-40 No
Abeta x-42 No
Blood Metabolic Analytes
CRP (c-reactive protein) Yes
Comments: Small subgroup for CRP-48
eGFR (estimated Glomular Filtration Rate) No
Glucose No
HbA1c No
Lipids No
Liver Function Tests No
Serum creatinine No
Homocysteine No
Folate No
Other blood samples Yes
Are laboratory protocols and storage information available for bloods No
Urine collection
Urine No
Autopsy data
Autopsy Yes
Details: Brain donation linked with the PD Brain Bank
Saliva
Saliva collected No
Details: Planned for future.
Cortisol No
CSF
CSF collected Yes
Details: CSF stored for 72 sporadic PD and 15 controls.
Are CSF laboratory protocols and storage information available? No
Other CSF Collected for storage IgG auto antibodies, exosomal particles.
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? No
Are retrospective interviews carried out after the participant's death? No
Is there a procedure for declining donation/failed recruitment/project termination? No
Has an actuarial analysis been completed? Yes

Lifestyle

Variable Response
Smoking Yes
Current smoking Data available
Former smoking Data available
Alcohol Data available
Abstainers/former users Data available
Drugs of abuse assessment
Obesity and associated risk factors
BMI Data available
Diet Yes
Coffee and caffeine Data available
Employment status
Employment status Data available
Living situation
Living situation Data available
Socioeconomic status
Socioeconomic status measures Data available
Sleep assessment
Questionnaires Data available
Comments: REM sleep behaviour disorder questionnaire plus Epworth Sleepiness Scale. Fatigue in PD.
Objective sleep staging (specify method) Data available

Ethics and Engagement

Variable Response
Participant engagement
Is there participant representation in the governance of the cohort? 3 people with PD from the cohort sit on the data access and biosample panel.
Do existing mechanisms for consulting/involving participants exist? 3 people with PD from the cohort sit on the data access and biosample panel.
If so, does this happen on an ongoing or an ad hoc basis? Ongoing
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? No
If yes, who is represented on it? NA
Does the cohort include participants who lack capacity? No
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? No
Disclosure
Do procedures exist for the disclosure of incidental findings? Yes
What kinds of finding do these relate to? (imaging, genotyping, etc) Clinically relevant.
Do procedures exist for the disclosure of clinically relevant information identified as a direct focus of the study? (e.g. a diagnosis of dementia) No
Recruitment
Consent and recontact
Is there consent for recontact? Yes
If so, under what conditions? Agreed to be contacted by the research team in future for anything relating to this research.

Data Management

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