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) | |