PRoBaNDParkinson’s Repository of

Biosamples and Networked Datasets

History HypothesesOverview

Linkage to other studies

Funded by Parkinson’s UK

Dr Donald GrossetConsultant Neurologist

Institute of Neurological SciencesGlasgow

PRoBAND: historyParkinson’s UK places call for major biomarker

study

Joint scientific and clinical consortia form

PRoBaND is the clinical consortium to 2 of 3 studies

Discovery Award goes to Oxford group

Parkinson’s UK seeks reactivation of PRoBaND

PRoBaND funded by Parkinson’s UK

PRoBaND: overview

Prospective clinical study of PD patients and relatives

DNA collected and stored

Serum collected and stored

PRoBaND: conceptsGenetic and biomarker diversity explains the varied clinical

phenotype of PD

Understanding these mechanisms will improve the design and interpretation of basic science and clinical therapeutic studies

Large sample sizes are needed to test subsets of PD patients characterised by particular clinical (or genetic, or biomarker) features

PRoBaND: sample size Patients

Recent onset PD Diagnosis under 50

2000 240

Gene tests 100 + 1900 – 12 + 228 –

PRoBaND: sample size Patients

Recent onset PD Diagnosis under 50

2000 240

Gene tests 100 + 1900 – 12 + 228 –

150 600

750  

Siblings

PRoBaND: sample size Patients

Recent onset PD Diagnosis under 50

2000 240

Gene tests 100 + 1900 – 12 + 228 –

150 600 18 72

750 90 

Siblings

PRoBaND: recruitment of PD cases35 centres x (average of) 32 cases x 2 years

Around 2200 cases

(PD diagnosed within last 3 years or <50 years)

Study visits 6-monthly for 3 years (recent onset) Only 0 and 6 months for young onsetBlood sample for DNA tests and biomarker analysisClinical scoring: motor, non-motor, olfactory

Clinical measurements: patients

Clinician scoring

*Past, social and family history

UPDRS - clinician

Cognitive – MoCA, fluency

*Response to medication

Diagnostic evolution

• Patient scoring• UPDRS – patient • *Smell – UPSIT• Depression – HADS• Sleep – ESS, RBD, PDSS• Autonomic – SCOPA• QoL – EQ5D, PDQ39• ICDs – QUIP• NMS scoring• Wearing-off

*Once during study

PRoBaND: recruitment of siblings25 centres x (average of) 16 cases x 2 years

Around 800 subjects

(sibs of PD cases recruited to main study)

Visit schedule: 0, 36 monthsBlood sample for DNA tests and biomarker analysisHealth questionnaires and clinical examination

PRoBaND biosamplesBlood for DNA (baseline only)

Serum for biomarkers (every 18 months)

CSF, skin NOT part of the PRoBaND protocol

Consent for future contact included

Parkinson’s UK Tissue Bank enrolment

PRoBaNDBasic plan for Parkinson gene

tests

LRRK2

GBA

Recent onset PD

Diagnosis under 50

Parkin (PARK 2)PINK-1 (PARK 6)

PRoBaNDBasic plan for Parkinson gene

tests

LRRK2

GBA

Recent onset PD

Diagnosis under 50

Parkin (PARK 2)PINK-1 (PARK 6)

Extend to new techniques eg. immunochip analysis

Oxford PD Discovery grantQueens Square PD MRC study (Clinical component)

GWAS and young-onset PD gene studiesNMS Long (NILS) Study

Parkinson’s UK Tissue Bank, ImperialFurther studies: eg. MRI for diagnosis / progression

Project linkage: the ‘Networked Datasets’ component of PRoBAND

Thanks to…Study centre principal investigators, PD nurse

specialists and teams

Parkinson’s UK

Glasgow BioMedicine

PRoBaND Committee members

National and international collaborators, advisors

DeNDRoN research network