2020 dataset
Clinical assessments
A matrix of clinical assessments for each group at each intervall
| Scale | Group | ||
| Recent-onset | Early-onset | Relative | |
|
Blood pressure |
Baseline 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
|
Brain imaging - previous |
Baseline 36 months |
Baseline |
Baseline 36 months |
| CISI-PD |
6 months 24 months 42 months 90 months |
6 months | |
| Diagnostic factors | Baseline | 6 months | |
|
Diagnostic features |
12 months 30 months 72 months 90 months |
||
| Dyskinesia scale | 54 months | ||
| Height | Baseline | Baseline |
Baseline 36 months |
| IQCODE | 54 months | ||
|
Medication current |
Baseline 6 months 12 months 18 months 30 months 36 months 42 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
|
Medication previous antiparkinson |
Baseline | Baseline |
Baseline 36 months |
|
Medication L-dopa challenge |
24 months 72 months |
||
| MoCA |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| UPDRS |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Weight |
Baseline 36 months 54 months |
Baseline |
Baseline 36 monthse |
Patient-reported measures
A matrix of patient-informed measures for each group at each interval
| Scale | Group | ||
| Recent-onset | Early-onset | Relative | |
|
Big Five Inventory (BFI) |
Baseline 12 months |
6 months |
36 months |
|
Constipation |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Demographics |
Baseline |
Baseline | Baseline |
|
Epworth Sleepiness Scale (ESS) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Family history | Baseline | Baseline |
Baseline |
| Hospital Anxiety and Depression Scale (HADS) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Medication - Wearing off |
30 months 72 months 90 months |
6 months | |
|
Mini Environmental Risk Questionnaire (MERQ) |
12 months | 6 months | 36 months |
|
Non-motor Symptoms Scale (NMSS) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Olfaction |
6 months |
6 months |
Baseline 36 months |
| Past medical history |
Baseline 90 months |
Baseline | Baseline |
|
Parkinson's Disease Questionnaire (PDQ8) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline | |
|
Parkinson's Disease Sleep Score (PDSS) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Quality of life (EQ-5D) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Questionnaire for Impulsive-Compulsive Disorder in Parkinson's Disease (QUIP) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| REM Sleep Behaviour Disorder screening (RBD) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Scales for Outcomes in Parkinson's Disease-Autonomic questionnaire (SCOPA-AUT) |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
| Social History | 6 months | 6 months | |
| UPDRS |
Baseline 18 months 36 months 54 months 72 months 90 months |
Baseline |
Baseline 36 months |
Biosamples
We collect blood samples at entry into the study for gene studies at Cardiff University and for long-term DNA storage at the ECACC. The blood is being tested for known common gene variants which are linked to Parkinson’s disease as follows – for all cases LRRK2 and GDA, for cases diagnosed under 50 (Parkin), (PARK2) and PINK1 (PARK6). This will be extended to new techniques involving Immunochip analysis.
In addition serum samples are being collected in approximately 80% of cases enrolled (some smaller centres do not have the facilities to process samples and store at minus 80°C). These samples are being collected at baseline in all cases and are repeated at 18 months and 3 years in patients with a recent onset of Parkinson’s disease and in relatives at 36 months.
APPLY FOR DATA ACCESS
Applications for data and biosample access are reviewed by our Data & Biosample Access committee.
Researchers should download and complete the form below, and submit via email.
Normally, applicants will receive a response within three weeks.
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