1. PRoBaND Parkinson’s Repository of Biosamples and Networked Datasets History Hypotheses Overview Linkage to other studies Funded by Parkinson’s UK Dr Donald Grosset Consultant Neurologist Institute of Neurological Sciences Glasgow

2. PRoBAND: history Parkinson’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

3. PRoBaND: overview Prospective clinical study of PD patients and relatives DNA collected and stored Serum collected and stored

4. PRoBaND: concepts Genetic 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

5. PRoBaND: sample size Patients Recent onset PDDiagnosis under 50 2000 240 Gene tests 100 + 1900 – 12 + 228 –

6. PRoBaND: sample size Patients Recent onset PDDiagnosis under 50 2000 240 Gene tests 100 + 1900 – 12 + 228 – 150 600 750 Siblings

7. PRoBaND: sample size Patients Recent onset PDDiagnosis under 50 2000 240 Gene tests 100 + 1900 – 12 + 228 – 150 600 18 72 750 90 Siblings

8. PRoBaND: recruitment of PD cases 35 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 onset Blood sample for DNA tests and biomarker analysis Clinical scoring: motor, non-motor, olfactory

9. 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

10. PRoBaND: recruitment of siblings 25 centres x (average of) 16 cases x 2 years Around 800 subjects (sibs of PD cases recruited to main study) Visit schedule: 0, 36 months Blood sample for DNA tests and biomarker analysis Health questionnaires and clinical examination

11. PRoBaND biosamples Blood 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

12. PRoBaND Basic plan for Parkinson gene tests LRRK2 GBA Recent onset PD Diagnosis under 50 Parkin (PARK 2) PINK-1 (PARK 6)

13. PRoBaND Basic 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

14. Oxford PD Discovery grant Queens Square PD MRC study (Clinical component) GWAS and young-onset PD gene studies NMS Long (NILS) Study Parkinson’s UK Tissue Bank, Imperial Further studies: eg. MRI for diagnosis / progression Project linkage: the ‘Networked Datasets’ component of PRoBAND

15. 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