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) |