Table 1.
Sources of Parkinson’s disease clinical data for integration and future analyses
| Study | Type of study | Number of patients | Duration of study (if longitudinal) | Reason for cohort (drugtrial/cohort study/other) | Study ongoing (yes/no) | Assessments | Tissue sample available (serum, plasma, CSF etc.) | Genotyped | Scanning (MRI, PET etc.) | Other |
| ICICLE | Longitudinal (predicting dementia) | 160 | 8 years | Predictingdementia | Yes | UPDRS, motor, non-motor, cognitivedecline | Serum, CSF,DNA, RNA | Yes | MRI baseline &18mo &FDGPET in ∼45 | Gait &sleepdata |
| CamPaIGN | Longitudinal(from time of diagnosis) | 142 (diagnosed between 2000– 2002) | 13– 15 years | Community-based incidencecohort | Yes | UPDRS, motor, non-motor, cognitivedecline | No | Yes (n = 129)(MAPT H1vs H2, COMT val(158)met, SNCA, APOE, MAOA), DNA stored | No | Neuropsychologic, mood, function, quality of life |
| PICNICS | Longitudinal(from time of diagnosis) | 286 (diagnosedDec 2007– June 2013) | 2– 7 years | Community-basedcohort study | Yes | UPDRS, motor, non-motor, cognitivedecline | Plasma andserum (n = 98), CSF (n = 11) | Yes (n = 276)(MAPT H1vs H2, COMT Val158Met, SNCA, BuChE, ApoE), DNA stored | Yes (n = 48) | Neuropsychologic, mood, function, quality of life |
| PRoBaND | Longitudinal(from time of diagnosisfor PD) | 3000 (2000patients within3 yrs of diagnosis, 240 young onsetand 760 relatives) | 3– 5 years | Community-basedcohort study | Yes | UPDRS, motor, non-motor, cognitivedecline | Serum | Yes, LRRK2 and GBA (all subjects) and Parkin and PINK1 (young onset) | Sub-study in4-5 centres | Olfactory function, Sleep, Autonomic function, Quality of life, Environmental exposures |
| OPDCDiscoverycohort | Longitudinal(within 3years ofdiagnosis) | 1650 (1100 PD patients within3 yrs of diagnosis; 100 PD relative early stage; 150 prodromal RBD; 300 control | 10 years | Community-basedcohort study | Yes | UPDRS I-IV,motor, non-motor, cognitive decline | Serum and DNSin all. Plasma, CSF, G.I biopsy tissue, skin in subgroup | Yes (n = 869) SNP analysis, DNA stored. 250 whole exome analysis. | MRI (structuraland functional) in 80 PD, 30 controls,25 RBDsubjects | Olfactory function, Objective motor testing (android phone app test, saccadometry) |
| TEVA-PRECEPT | Longitudinal | 806 early PD | Terminatedearly (averageof 21.4 months follow-up) | Clinical trial | No | UPDRS,cognition, depression,quality of life | No | No | Beta-CIT SPECT imaging | |
| TEVA-ADAGIO | Longitudinal | 1176 early PD | 72 weeks | Delayed startclinical trial | No | UPDRS | No | No | Beta-CIT SPECT imaging | Rasagiline as a disease-modifyingtherapy in PD |
| PostCept (and LABS-PD) | Longitudinal | 709 subjectsfrom PRECEPT enrolled into PostCEPT and LABS-PD | Ongoing since2008 | Population-basedstudy | Yes | UPDRS, qualityof life,cognition | Serum, blood biomarkers(alpha-synuclein, proteomics) | yes (DNAbanking) | Beta-CIT SPECT imaging, DAT imaging | PostCEPT rolledinto LABS-PD |
| (Continued) | ||||||||||
| Parkinson Progression Marker Initiative (PPMI) Biomarker Study | Longitudinal (from time of diagnosis) | 400 newly diagnosed PD, 200 controls, 64 SWEDD, 100 prodromal, 600 genetic registry participants | Ongoing since 2010 | Community-based cohort study | Yes | UPDRS-III,motor, non-motor, cognitive decline MDS-UPDRS | DNA, RNA, serum, plasma, urine, CSF | Yes (ApoE and selected SNPs) | MRI, DAT, PET ([18F] florbetaben) CT (some sites) | |
| DATATOP | Longitudinal | 800 | 8 years | Clinical trial | No | UPDRS, cognition, depression, quality of life | Serum, urine,CSF, DNA | Yes by requesting for access to biospecimen repository | No | Video repository |
| CALM-PD | Longitudinal | 301 | 2– 4 years | Clinical trial | No | dopaminergicmotor complication, UPDRS, quality of life, MMSE | No | No | Beta-CIT SPECT imaging | Health care utilization |
| TEMPO | Longitudinal | 404 (early PD) | 1 year | Clinical trial | No | UPDRS, qualityof life, MMSE, depression | No | No | No | Rasagiline pharmacokinetics, platelet MAO-B activity |
| ELLDOPA | Longitudinal | 361 | 42– 44 weeks | Clinical trial | No | UPDRS, qualityof life, MMSE, Hamilton depression scale | No | No | Beta-CIT Spect imaging (select subjects) | Video repository |
| PRESTO | Longitudinal | 472 (advancedPD) | 6 months | Clinical trial | No | UPDRS, “on-off” diaries, quality of life, MMSE | No | No | No | Rasagiline pharmacokinetics, platelet MAO-B activity |
| The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson’s Disease Biomarker Program(PDBP) | 439 Cross-sectional,825 Longitudinal(3– 5 years) | 748 PD, 386 control, 50 Multisystem Atrophy, 50 Progressive Supranuclear Palsy, 30 Essential Tremor | 3-5 years | Community-basedcohort study | Yes | MDS-UPDRS,motor, non-motor, cognitivedecline | CSF (269), plasma (674), serum (775), RNA (1,234), DNA (1,191) | Yes, NeuroXchip | MRI (290), DTI (440), fMRI (150) | Gait (120), biosample QC(hemoglobin analysis for plasma, serumand CSF), qualityof life |
The studies in this table represent the candidate PDclinical studies that were described at the PD data sharingconsensus conference as potential sources of data forstandardization, integration and future analyses by principleinvestigators and meeting participants. This is not acomprehensive list of all possible PD studies yet provided aframework for the stakeholders and potentialroadmap (Fig. 1).