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 | |
| Principal Investigator (PI) | Dr Michele Hu |
| Key Study References | |
| 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 | 01/09/2010 00:00:00 |
| 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 |