Tracking Parkinson's
Tracking Parkinson's

DATA OVERVIEW

2019 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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