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