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Table 1 Overview of data sources characteristics (n = 53)

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

Characteristics Included Status Country Study population
All (n = 53) Ongoing (n = 16) Completed (n = 37) USA (n = 42) International (n = 11) Parkinson cohort
(n = 25)
“Generic” cohort
(n = 28)
Size (number of Parkinsonian patients)
  0-500 42 (79) 11 (69) 31 (84) 37 (88) 5 (45) 22 (88) 20 (71)
500-1000 7 (13) 4 (25) 3 (8) 3 (7) 4 (36) 3 (12) 4 (14)
>1000 4 (8) 1 (6) 3 (8) 2 (5) 2 (18) 0 (0) 4 (14)
Duration of follow-up (years)
  <2 6 (11) 0 (0) 6 (16) 4 (10) 2 (18) 4 (16) 2 (7)
2-5 20 (38) 4 (25) 16 (43) 16 (38) 4 (36) 13 (52) 7 (25)
≥5 27 (51) 12 (75) 15 (41) 22 (52) 5 (45) 8 (32) 19 (68)
Dimensions assessed
  Motor and neurological 46 (87) 12 (75) 34 (92) 36 (86) 10 (91) 25 (100) 21 (75)
Cognition 41 (77) 13 (81) 28 (76) 36 (86) 5 (45) 17 (68) 24 (86)
Psychiatric symptoms 38 (72) 10 (63) 28 (76) 30 (71) 8 (73) 19 (76) 17 (61)
Activities of daily living 22 (42) 6 (38) 16 (43) 15 (36) 7 (64) 12 (48) 10 (36)
Sleep quality 11 (21) 4 (25) 7 (19) 5 (12) 6 (55) 2 (8) 9 (32)
Quality of life 9 (17) 4 (25) 5 (14) 5 (12) 4 (36) 6 (24) 3 (11)
Autonomic symptoms 7 (13) 4 (25) 3 (8) 3 (7) 4 (36) 0 (0) 7 (25)
Other 20 (38) 9 (56) 11 (30) 13 (31) 7 (64) 8 (32) 12 (43)
Other assessments
  Current medications 43 (81) 13 (81) 30 (81) 32 (76) 11 (100) 22 (88) 21 (75)
Comorbidities 42 (79) 14 (88) 28 (76) 31 (74) 11 (100) 20 (80) 22 (79)
Medical imaging 19 (36) 6 (40) 13 (34) 11 (26) 8 (73) 6 (24) 13 (46)
Genetics 16 (30) 6 (38) 10 (27) 10 (24) 6 (55) 3 (12) 13 (46)
Caregiver burden 6 (11) 4 (27) 2 (5) 5 (12) 1 (9) 4 (16) 2 (7)
Healthcare costs 1 (2) 1 (7) 0 (0) 0 (0) 1 (9) 1 (4) 0 (0)
  1. Data are shown as absolute frequency (percentage)