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Table 3 Overview of data source measurements and of the number of evaluations or assessments applied (n = 53)

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

Nb Study Motor and neurological Cognition Psychiatry Activities of daily living Sleep Quality of life Autonomic Other
1 A Longitudinal Observational Follow-up of the PRECEPT Study Cohort 3 4 3 1 0 0 0 0
2 Abnormalities in metabolic network activity precede the onset of motor symptoms in Parkinson’s disease 2 0 0 0 0 0 0 0
3 Amyloid is linked to cognitive decline in patients with Parkinson disease without dementia 2 14 1 0 0 0 0 0
4 Arizona Study of Aging and Neurodegenerative Disease 4 12 3 0 1 0 1 1
5 Ashkenazi Jewish LRRK2 consortium cohort 3 2 2 2 1 0 1 1
6 Baltimore Longitudinal Study of Aging 0 2 3 0 0 0 0 0
7 Boston university medical center - University of Alabama Birmingham - Washington University in Saint Louis School of medicine 9 1 1 0 0 1 0 0
8 Central Control of Mobility in Aging 2 1 1 0 0 0 0 0
9 Cerebral glucose metabolic features of Parkinson disease and incident dementia: longitudinal study 1 6 0 0 0 0 0 0
10 Charting the progression of disability in parkinson disease 9 1 1 0 0 1 0 0
11 Clinical course in Parkinson’s disease with elevated homocysteine 1 9 1 1 0 0 0 0
12 Clinical Research in Neurology (CRIN) - Emory center 0 1 0 0 0 0 0 0
13 Comparative utility of the BESTest; mini-BESTest; and brief-BESTest for predicting falls in individuals with Parkinson disease: a cohort study 5 0 0 0 0 0 0 0
14 Comparison of the Agonist Pramipexole With Levodopa on Motor Complications of Parkinson’s Disease 3 1 2 2 1 3 0 0
15 Contursi kindred 1 1 1 1 1 0 1 1
16 Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism 2 5 0 0 0 0 0 0
17 Depression in Parkinson’s disease 2 0 1 1 0 0 0 0
18 Dopamine agonist withdrawal syndrome in parkinson disease 2 1 4 1 0 1 0 0
19 Einstein Aging Study (Bronx Aging Study) 2 11 1 0 0 0 0 0
20 Emergence and evolution of social self-management of Parkinson’s disease 2 2 1 1 0 4 0 0
21 Hallucinations and sleep disorders in PD: ten-year prospective longitudinal study 2 1 1 0 1 0 0 0
22 Harvard Alumni Health Study 0 0 0 0 0 0 0 0
23 Health Professionals Follow-up Study 0 0 0 0 0 0 0 0
24 Honolulu Asia Aging Study 2 4 2 0 1 0 1 1
25 Longitudinal study of normal cognition in Parkinson disease 2 6 2 1 0 0 0 0
26 Long-term outcomes of bilateral subthalamic nucleus stimulation in patients with advanced Parkinson’s disease 2 2 2 2 0 0 0 0
27 Loss of ability to work and ability to live independently in Parkinson’s disease 2 0 1 1 0 0 0 0
28 Major life events and development of major depression in Parkinson’s disease patients 1 2 2 0 0 0 0 0
29 Mayo Clinic cohort study of Personality and Aging (including Rochester Epidemiology project) 0 0 4 0 0 0 0 0
30 Mayo clinic study of aging (Olmsted county resident) - Rochester Epidemiology project indexing system 1 10 3 0 1 0 1 1
31 Molecular Epidemiology of Parkinson’s Disease 1 3 0 0 0 0 0 0
32 Mood and motor trajectories in Parkinson’s disease: multivariate latent growth curve modeling 1 0 2 0 0 0 0 0
33 Mood and Subthalamic Nucleus Deep Brain Stimulation 2 0 7 0 0 0 0 0
34 Morris K Udall Parkinson’s Disease Research Center of Excellence cohort - Veteran affair 2 3 2 1 0 1 0 1
35 National Parkinson Foundation Quality Improvement Initiative 3 2 0 0 0 1 0 1
36 NeuroGenetics Research Consortium 1 1 1 0 0 0 0 0
37 Nurses’ Health Study 0 5 0 0 0 0 0 0
38 Oxford Parkinson’s Disease Centre 6 3 2 1 2 1 0 2
39 Parkinson’s Associated Risk Study 0 0 2 0 0 0 0 1
40 Parkinson’s Disease Biomarkers Program 4 3 6 1 6 5 1 3
41 Parkinson’s Disease Research Education and Clinical Center - Parkinson’s Genetic Research Study 3 1 0 1 0 0 0 0
42 Parkinson’s disease: increased motor network activity in the absence of movement 2 1 0 0 0 0 0 0
43 Parkinson’s progression biomarkers initiative 1 5 4 2 2 0 1 2
44 Prospective cohort study of impulse control disorders in Parkinson’s disease 2 1 2 1 0 0 0 0
45 Rate of 6-18Ffluorodopa uptake decline in striatal subregions in Parkinson’s disease 2 1 0 0 0 0 0 0
46 Religious Order Study 6 11 4 1 0 0 0 0
47 Rush Memory and Aging Project 5 1 3 1 1 0 0 2
48 Study of Osteoporotic Fractures (SOF) Research Group 2 1 1 0 0 0 0 2
49 The effect of age of onset of PD on risk of dementia 1 6 1 0 0 0 0 0
50 University of California Los Angeles Center for Genes and Environmental in Parkinson’s Disease 2 1 1 0 0 0 0 0
51 University of Miami Brain Endowment Bank 1 0 0 1 0 0 0 2
52 UPDRS activity of daily living score as a marker of Parkinson’s disease progression 1 0 1 1 0 0 0 0
53 Washington Heights-Inwood Columbia Aging 1 6 0 1 0 0 0 0