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Table 2 Overview of data sources characteristics listed in alphabetic order (n = 53)

From: Inventory of real world data sources in Parkinson’s disease

Nb Study Acronym Individuals included Follow-up duration (y) Planned follow-up Main inclusion criteria
1 A Longitudinal Observational Follow-up of the PRECEPT Study Cohorta PostCEPT 537 4   Post-RCT; under dopaminergic therapy
2 Abnormalities in metabolic network activity precede the onset of motor symptoms in Parkinson’s disease   15 4 Every 2 years Hemi parkinsonism
3 Amyloid is linked to cognitive decline in patients with Parkinson disease without dementia   46 5 Annually  
4 Arizona Study of Aging and Neurodegenerative Disease AZSAND 3000 ongoing   
5 Ashkenazi Jewish LRRK2 consortium cohort LRRK2 2611 1.5 Every 12-18 months Ashkenazi Jewish
6 Baltimore Longitudinal Study of Aging BLSA 10,000? ongoing Every few years for life Healthy
7 Boston university medical center - University of Alabama Birmingham - Washington University in Saint Louis School of medicine   80 2   >40 years
8 Central Control of Mobility in Aging CCMA 439 ongoing Annually Elderly (>65 years); non demented
9 Cerebral glucose metabolic features of Parkinson disease and incident dementia: longitudinal study   50 4 Annually Levodopa treatment
10 Charting the progression of disability in Parkinson disease   171 2 Every 6 months >40 years; mild to moderate Parkinson’s disease
11 Clinical course in Parkinson’s disease with elevated homocysteine   97 2 Every 2 years 35-90 years without brain surgery or neurologic/psychiatric comorbidity
12 Clinical Research in Neurology (CRIN) - Emory center CRIN 3581 15   
13 Comparative utility of the BESTest; mini-BESTest; and brief-BESTest for predicting falls in individuals with Parkinson disease: a cohort study BESTest 80 1 Every 6 months Without neuropsychiatric comorbidities
14 Comparison of the Agonist Pramipexole With Levodopa on Motor Complications of Parkinson’s Diseasea CALM-PD follow-up 301 2 Annually Post-RCT; under dopaminergic therapy; diagnostic < 7 years
15 Contursi kindred CONTURSI 210 ?   
16 Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonisma DATATOP 403 6 Every 3 months Early phase; postRCT; 30-79 years
17 Depression in Parkinson’s disease   685 3.9 Annually  
18 Dopamine agonist withdrawal syndrome in Parkinson diseasea DAWS 93 0.25 Annually Non demented
19 Einstein Aging Study (Bronx Aging Study) EAS 791 ongoing Every 12 to 18 months Elderly (>70 years)
20 Emergence and evolution of social self-management of Parkinson’s disease   120 3 Every 6 months Non demented
21 Hallucinations and sleep disorders in PD: ten-year prospective longitudinal study   89 10 0; 6 months; 18 months; 4 years; 6 years; 10 years 24-h caregiver; without neuroleptic treatment; without some comorbidities
22 Harvard Alumni Health Study   500,002 77 1962; 1966; 1972; 1988; 1993 Harvard students
23 Health Professionals Follow-up Study HPFS 51,529 ongoing Biannually Men; healthy; 40-75 years
24 Honolulu Asia Aging Study HAAS 3741 15 3 times between 1994 and 2001 Elderly Japanese-American men
25 Longitudinal study of normal cognition in Parkinson disease   141 6 Biannual for 4 years and annual after Normal cognition at baseline
26 Long-term outcomes of bilateral subthalamic nucleus stimulation in patients with advanced Parkinson’s diseasea   33 2 0 –3 –6 –12 –18 – 24 months Advanced phase with deep brain stimulation
27 Loss of ability to work and ability to live independently in Parkinson’s disease   495 10   
28 Major life events and development of major depression in Parkinson’s disease patients PEG study 221 4 Annually New onset (within 3 years)
29 Mayo Clinic cohort study of Personality and Aging (including Rochester Epidemiology project)   7216 29.2 Historically for life 20-69 years
30 Mayo clinic study of aging (Olmsted county resident) - Rochester Epidemiology project indexing system MCSA 2739 ongoing   
31 Molecular Epidemiology of Parkinson’s Disease MEPD 1600 ongoing   >40 years
32 Mood and motor trajectories in Parkinson’s disease: multivariate latent growth curve modeling   186 1.5 6 months; 18 months  
33 Mood and Subthalamic Nucleus Deep Brain Stimulationa MOST 91 1   Deep brain stimulation eligible; not demented
34 Morris K Udall Parkinson’s Disease Research Center of Excellence cohort - Veteran affair Udall 314 ongoing   Elderly (>60 years)
35 National Parkinson Foundation Quality Improvement Initiative NPF-QII 10,000 on going   
36 NeuroGenetics Research Consortium NGRC 3072 >10   
37 Nurses’ Health Study NHS 280,000 ongoing Every 2 years Women; healthy; 19-51 years
38 Oxford Parkinson’s Disease Centre OPDC 1500 1.5 18 months  
39 Parkinson’s Associated Risk Study PARS 10,000 ongoing   Elderly (>60 years)
40 Parkinson’s Disease Biomarkers Program PDBP 1436 ongoing   Evidence of response to dopaminergic medication
41 Parkinson’s Disease Research Education and Clinical Center - Parkinson’s Genetic Research Study PADRECCS - PaGeR 1880 ongoing   
42 Parkinson’s disease: increased motor network activity in the absence of movement NMRP 12 4.4 Every 2 years Non demented; tremor-dominant clinical manifestations; without some comorbidities
43 Parkinson’s Progression bioMarkers Initiative PPMI 748 ongoing Every 3 months the first year then every 6 months Untreated recently diagnosed
44 Prospective cohort study of impulse control disorders in Parkinson’s disease ICD-PD 164 4   Non demented
45 Rate of 6-18Ffluorodopa uptake decline in striatal subregions in Parkinson’s disease   37 4 Every 1 to 2 years  
46 Religious Order Study ROS >1100 >7 Annually Elderly; religious clergy
47 Rush Memory and Aging Project RMAP 1556 5 Annually Elderly without know dementia
48 Study of Osteoporotic Fractures (SOF) Research Group SOF 9704 >6 Tri-annually Women; Elderly (>65 years)
49 The effect of age of onset of PD on risk of dementia   440 4 Annually Elderly (>65 years)
50 University of California Los Angeles Center for Genes and Environmental in Parkinson’s Disease UCLA CGEP 363 5   Diagnostic >3 years
51 University of Miami Brain Endowment Bank UM/BEB 150 ongoing Annually Consent to donate brain
52 UPDRS activity of daily living score as a marker of Parkinson’s disease progression   162 6 Every 2 years  
53 Washington Heights-Inwood Columbia Aging WHICAP 2776 3.7 Annually Elderly (>65 years)
  1. Post-RCT = Open label extension after a Randomized Controlled Trial
  2. aTreatment directed data sources