Cohort Descriptives

Variable Response
Cohort Name Oxford Parkinson's Disease Centre Discovery Cohort
Cohort Acronym OPDC Discovery
DOI Hu, M. (2017). OPDC Discovery [Data set]. Dementias Platform UK. https://doi.org/10.48532/036000
Study Overview The Oxford Parkinson's Disease Centre (OPDC) Discovery cohort is a prospective, longitudinal study that has recruited patients with early idiopathic Parkinson's Disease, healthy controls and participants at risk of PD, and also participants with REM Sleep Behaviour Disorder. The study will provide a wealth of data to better understand how Parkinson's progresses in different ways in different people, which has the potential to provide valuable information to patients early during diagnosis. Looking tothe future, the OPDC remains very committed to harnessing novel and innovative technologies to better diagnose and monitor sypmtoms of Parkinson's. The hope is to validate an exciting technology in the research and home-based settings, and harness the innovative technology to better manage Parkinson's in the future and give back affected individuals an element of control over their symptom fluctuation.
#Subjects at Baseline 1082 PD, 297 controls, 106 PD relatives, 104 REM Sleep Behaviour Disorder
Institution Name University of Oxford
Department Name Oxford Parkinson's Disease Centre
City Oxford
Study/Database Website

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

Principal Investigator (PI) Dr Michele Hu
Key Study References

Please see Literature section

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 (nurse and doctor)
Does this take place in participants' homes or at a central location? Central location (research clinics)
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 9/1/2010 12:00:00 AM
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Willing and able to give informed consent. Fluent in English. Aged 18 or above. Patients: Idiopathic PD case diagnosed within last 3 years according to the UK PD Brain Bank criteria. No evidence of significant cognitive impairment. Controls: Age and sex strata matched. Spouses and friends of PD participants. At-risk group: First degree relatives of PD patients. Small group of patients with REM behaviour sleep disorder (RBD) diagnosed on polysomnography.
Exclusion criteria Patients: Non-idiopathic parkinsonism. Secondary parkinsonism due to head trauma or medication use. Atypical parkinsonism syndromes (multiple system atrophy, progressive supranuclear palsy, corticobasal degeneration). Dementia preceding PD by one year suggestive of Dementia with Lewy bodies. Cognitive impairment precluding informed consent. Controls: Family history of PD. Past history of stroke, alcohol or drug abuse. A score <100% on the Schwab and England disability scale. Extrapyramidal features on neurological examination.

Administration

Variable type
Age At Baseline Assessment
Date Of Birth
Gender Of Patient
Unique Patient Identifier
Visit Date

Sociodemographic

Sub-category Variable type Baseline
Deprivation Number of bedrooms in home Y
Deprivation Number of vehicles available Y
Deprivation Whether has vehicle available Y
Education Age when left school Y
Education Number of years of further education Y
Education Whether had further education Y
Employment Employment status Y
Employment Whether had job supervising others Y
Ethnicity Ethnic origin Y
Marital Status Marital status Y
Marital Status Number of times been married Y

Family History

Sub-category Variable type Baseline
Adopted Whether adopted Y
Children Number of children Y
Children Number of children with PD/other neurological conditions Y
Extended Number of aunts/uncles Y
Extended Number of aunts/uncles with PD/other neurological conditions Y
Extended Number of other family members with PD/other neurological conditions Y
Father Father with PD/other neurological conditions Y
Gparents Number of grandparents Y
Gparents Number of grandparents with PD/other neurological conditions Y
Mother Mother with PD/other neurological conditions Y
Siblings Number of full/half-siblings Y
Siblings Number of full/half-siblings with PD/other neurological conditions Y
Siblings Number of identical/non-identical twins Y
Siblings Number of identical/non-identical twins with PD/other neurological conditions Y

Early Life History

Sub-category Variable type Baseline
Handedness Dominant hand Y

Physical Health Status

Sub-category Variable type Baseline
Cancer History of bowel/colon cancer Y
Cancer History of breast cancer Y
Cancer History of lung cancer Y
Cancer History of melanoma Y
Cancer History of prostate cancer Y
Cardiothoracic Number of vascular diseases Y
Cardiothoracic History of angina Y
Cardiothoracic History of heart attack Y
Cardiothoracic History of heart failure Y
Cardiothoracic History of high blood pressure Y
Cardiothoracic History of high cholesterol level Y
Cerebrovascular History of stroke/mini-stroke Y
ENT Problems with smell/taste Y
ENT Swallowing difficulties (dysphagia) Y
Eyes Eyelid disturbances Y
Eyes Oculomotor disturbances Y
Gastrointestinal Frequency of average daily bowel movement in past week Y
General Health Any falls Y
General Health Had cold/flu in last two weeks Y
General Health Head injury/unconsciousness before PD diagnosis Y
General Health History of diabetes Y
General Health Urinary dysfunction Y
General Health Very rapid speech (tachyphemia) Y
Respiratory History of asthma Y
Respiratory History of chronic bronchitis Y
Respiratory History of emphysema Y
Rheumatology History of gout Y
Rheumatology History of rheumatoid arthritis Y

Reproductive History

Sub-category Variable type Baseline
Female Had one/both ovaries removed before PD diagnosis Y
Female Year had ovaries removed Y

Healthcare Utilisation

Sub-category Variable type Baseline
Medications Levodopa equivalent daily dose Y
Medications Medication for treating symptoms of PD Y
Medications Patient is untreated Y
Medications Patient on amantadine Y
Medications Patient on anticholinergics Y
Medications Patient on COMT inhibitors Y
Medications Patient on dopamine agonists Y
Medications Patient on levodopa Y
Medications Patient on MAOB-I Y
Medications Used laxatives in past week Y

Life Functionality

Sub-category Variable type Baseline
Daily Living MDS-UPDRS Part II "Motor Aspects of Experiences of Daily Living" Y
Daily Living Schwab and England Activities of Daily Living Y

Psychological Status

Sub-category Variable type Baseline
Personality Big-Five Inventory questionnaire Y
Quality Of Life EQ-5D quality of life instrument Y
Sleep Epworth sleepiness scale Y
Sleep REM sleep behaviour disorder screening questionnaire Y

Mental Health Status

Sub-category Variable type Baseline
Disorders MDS-UPDRS Part I "Non Motor Aspects of Experiences of Daily Living" - Hallucinations/Psychosis Y
Disorders Questionnaire for Impulsive-Compulsive Disorders in PD (QUIP) Y
Mood Beck's Depression Inventory (BDI) Y
Mood Diagnosed with anxiety/depression before PD diagnosis Y
Mood Hospital Anxiety and Depression Scale (HADS) Y
Mood MDS-UPDRS Part I "Non Motor Aspects of Experiences of Daily Living" - Mood Y

Cognition

Sub-category Variable type Baseline
Cognitive Performance Informant Questionnaire on Cognitive Decline in the Elderly (IQ-CODE) Y
Cognitive Performance Mini Mental State Examination (MMSE) Y
Cognitive Performance Montreal Cognitive Assessment (MOCA) Y
Cognitive Performance Phonemic/semantic fluency Y
Cognitive Status Age at diagnosis/onset of PD Y
Cognitive Status Bradykinesia/slowness present at PD diagnosis Y
Cognitive Status Duration of disease since onset/diagnosis of PD Y
Cognitive Status Hoehn and Yahr stage Y
Cognitive Status PD developed at least 1 year before dementia Y
Cognitive Status Postural instability/balance problems present at PD diagnosis Y
Cognitive Status Probability of alternative conditions similar to PD Y
Cognitive Status Probability of idiopathic PD Y
Cognitive Status Resting tremor present at PD diagnosis Y
Cognitive Status Rigidity/stiffness present at PD diagnosis Y

Lifestyle

Sub-category Variable type Baseline
Alcohol Average number of units drunk per week before PD diagnosis Y
Alcohol Number of units drunk per week at present Y
Diet Average amount of caffeine consumed at present Y
Diet Average amount of caffeine consumed per day before PD diagnosis Y
Diet Average daily consumption of fruit/veg Y
Physical Exercised in past week Y
Sexual Sexual dysfunction Y
Smoking Number of cigarettes smoked per day at present/before PD diagnosis Y
Smoking Number of years smoked regularly before PD diagnosis Y
Smoking Regularly smoke cigarettes at present Y
Smoking Smoked cigarettes regularly before PD diagnosis Y

Physical Environment

Sub-category Variable type Baseline
Housing Lived with a smoker before PD diagnosis Y
Housing Type of accommodation Y
Toxic Ever exposed to pesticides Y
Toxic Worked with chemical solvents for more than 6 months Y
Toxic Worked with heavy metals for more than 6 months Y
Toxic Worked with other chemicals/fumes Y
Work Ever had job where used pesticides Y

Physical Examination

Sub-category Variable type Baseline
Anthropometry Body mass index Y
Anthropometry Standing height in m Y
Anthropometry Weight in kg Y
Heart Lying/standing blood pressure Y
Heart Lying/standing pulse Y
Mobility Dyskinesias present Y
Mobility Flamingo test Y
Mobility Freezing of gait Y
Mobility Get up and go test Y
Mobility Hyperreflexia Y
Mobility MDS-UPDRS Part III "Motor Examination" Y
Mobility MDS-UPDRS Part IV "Motor Complications" Y
Mobility Purdue pegboard test Y
Nose Sniffin sticks identification test Y

Imaging

Sub-category Variable type Baseline
CT CT scan Y
MRI MRI scan Y
Spect DAT scan Y