Cohort Descriptives

Variable Response
Cohort name Parkinson MRI Imaging Repository: Part 2 Database
Cohort acronym PaMIR
General Study Overview The aim is to co-recruit 300 patients with Parkinson's disease from Tracking PD and 100 age matched healthy controls independently, sharing data between research centres and maximising the life-time value of research data assets.
Number of subjects at baseline 400
Institution name University of Nottingham
Department name Radiological Sciences
City Nottingham
Study or database website

http://www.hra.nhs.uk/news/research-summaries/parkinson-mr-imaging-repository-part-1-multicentre-mri-study-in-pd/

Principal Investigator (PI): Name Dorothee P. Auer
PI: Address Room W/B 1441, Queen's Medical Centre, Nottingham, NG7 2UH, UK
PI: email

dorothee.auer@nottingham.ac.uk

PI: phone 01158231178
Administrative Contact (AC): Name Yue Xing
AC: Address DCN Administrator, Stroke QMC, D floor, South Block, Queen's Medical Centre, Derby Road, Nottingham, NH7 2UH
AC: email Yue.Xing@nottingham.ac.uk
AC: phone (44)0115 8231176
Technical Contact/Data manager (TC): Name Xingfeng Li
TC: Address W/B 1439, B floor, West Block, Queen's Medical Centre, Derby Road, Nottingham, NG7 2UH
TC: email

xingfeng.li@nottingham.ac.uk

TC: phone 01158231177
Population based study? Yes
Family based study? No
Clinical based sample? Yes
Is there follow-up data available? Yes
How is data collected? In person: Brain MRI Scan
Who carries out data collection? Clinical staff: Researchers from 5 UK Centres
Does this take place in participants' homes or at a central location? Central
Do participants take part individually or are families/partners involved? Individually
Study start date 2013-01-01
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Parkinson's Disease

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Age at time of diagnosis of dementia Elderly, exact ages not yet calculated
Sex Yes
Physical examinations
Any physical examination performed? Yes
Gait assessment Data available: UPDRS score
Medical conditions

Cognitive Outcomes

Variable Response
Other assessments of global cognition MDS-UPDRS

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
Functional rating scales
Health service utilisation

Imaging

Variable Response
For imaging data, what format(s) do you use for storing data? DICOM
Structural T1 Acquired
Acquired
Diffusion imaging (DTI/DWI) Acquired
Acquired
f-MRI (rest) Acquired
Acquired
Do you use an imaging data management system (e.g. XNAT or LORIS)? Yes
If yes, which system do you use? XNAT

Genetics

Variable Response
Overview
Gene screening

Biological samples

Variable Response
Blood Metabolic Analytes
Urine collection
Autopsy data
Saliva
CSF

Brain donation

Variable Response

Lifestyle

Variable Response
Drugs of abuse assessment
Obesity and associated risk factors
Employment status
Living situation
Socioeconomic status
Sleep assessment

Ethics and Engagement

Variable Response
Participant engagement
Ethics
Is there an ethics advisory or ELSI group within the cohort governance? Yes, applying research ethics from HRA
Disclosure
Recruitment
Consent and recontact
Is there consent for recontact? Yes
If so, under what conditions? Anonymisation, and free to withdraw

Data Management

Variable Response
Consent for linkage to routine data
Which parts of the UK are represented by participants in your cohort? England
England: Nottingham, Derby, Newcastle, London, Manchester
Scotland: Glasgow