Table 1.
Baseline characteristics of the study cohort by status of requesting individual research results
| LRRK2 carriers with PD (n = 60) | LRRK2 carriers without PD (n = 217) | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Personal only*
(n = 7) |
Clinician only (n = 29) |
Both (n = 16) |
None (n = 8) |
P value | Personal only* (n = 68) |
Clinician only (n = 43) |
Both (n = 17) |
None (n = 89) |
P value | |
| Age, years | 61.6 (11.2) | 69.9 (7.6) | 69.3 (5.2) | 62.4 (10.0) | 0.02 | 54.0 (14.8) | 54.8 (14.0) | 61.5 (13.5) | 51.4 (15.8) | 0.08 |
| Women, n (%) | 2 (28.6) | 14 (48.3) | 9 (56.3) | 6 (75.0) | 0.34 | 39 (57.4) | 23 (53.5) | 9 (52.9) | 57 (64.0) | 0.61 |
| White race, n (%) | 6 (85.7) | 29 (100.0) | 16 (100.0) | 8 (100.0) | 0.12 | 67 (98.5) | 39 (90.7) | 17 (100.0) | 82 (92.1) | 0.15 |
| Hispanic/Latino, n (%) | 0 (0.0) | 2 (6.9) | 1 (6.3) | 1 (12.5) | 0.88 | 4 (5.9) | 3 (7.0) | 0 (0.0) | 9 (10.1) | 0.58 |
| Ashkenazi Jewish, n (%) | 7 (100.0) | 23 (79.3) | 12 (75.0) | 6 (75.0) | 0.61 | 50 (73.5) | 30 (69.8) | 14 (82.4) | 65 (73.0) | 0.80 |
| > High school education, n (%) | 7 (100.0) | 28 (96.6) | 16 (100.0) | 8 (100.0) | 0.99 | 66 (97.1) | 43 (100.0) | 17 (100.0) | 88 (98.9) | 0.69 |
| Family history of PD, n (%) | 5 (71.4) | 18 (62.1) | 11 (68.8) | 6 (75.0) | 0.93 | 38 (55.9) | 22 (51.2) | 10 (58.2) | 54 (60.7) | 0.77 |
| New to PD or LRRK2 research participation, n (%) (n = 263) | 2 (28.6) | 8 (28.6) | 10 (62.5) | 1 (12.5) | 0.06 | 48 (72.7) | 36 (90.0) | 12 (75.0) | 63 (76.8) | 0.21 |
| MDS-UPDRS | ||||||||||
| Part I | 11.9 (6.1) | 11.8 (5.0) | 9.7 (6.0) | 9.5 (4.6) | 0.51 | 5.4 (4.0) | 7.1 (4.9) | 7.2 (8.3) | 6.0 (5.0) | 0.27 |
| Part II (n = 274) | 10.3 (8.6) | 11.1 (7.5) | 9.9 (8.7) | 8.9 (7.5) | 0.90 | 1.0 (2.1) | 2.2 (4.0) a | 1.4 (3.0) | 0.7 (1.5) a | 0.01 |
| Part III (modified) | 24.7 (8.4) | 24.0 (11.0) | 20.6 (10.3) | 18.0 (14.1) | 0.46 | 1.9 (4.0) | 2.1 (4.0) | 2.2 (3.8) | 1.1 (2.8) | 0.32 |
| MoCA | 27.4 (1.9) | 26.8 (2.1) | 27.6 (1.7) | 26.6 (3.2) | 0.54 | 27.7 (1.8) | 27.4 (2.4) | 27.4 (2.0) | 27.6 (2.1) | 0.87 |
| REM SBDSQ (n = 274) | 3.4 (2.0) | 3.4 (2.4) | 4.6 (3.2) | 3.1 (2.2) | 0.41 | 3.0 (2.4) | 3.5 (2.5) | 3.7 (3.0) | 3.2 (2.8) | 0.71 |
| ESS (n = 274) | 7.6 (4.9) | 4.9 (3.1) | 5.5 (2.6) | 4.6 (2.1) | 0.21 | 4.2 (2.7) | 5.0 (3.6) | 3.4 (3.5) | 4.0 (2.5) | 0.18 |
| BDI-II (n = 274) | 8.9 (4.4) | 11.0 (7.4) | 7.4 (6.8) | 6.1 (5.6) | 0.19 | 4.8 (6.8) | 5.4 (4.8) | 4.6 (9.3) | 5.0 (6.4) | 0.96 |
| SCOPA-AUT (n = 274) | 12.9 (5.6) | 13.7 (7.3) | 12.2 (9.0) | 9.4 (5.4) | 0.54 | 7.1 (4.5) | 8.9 (5.9) | 9.4 (10.6) | 6.8 (5.5) | 0.12 |
| Parkinson Anxiety Scale (n = 274) | 9.3 (6.8) | 6.8 (7.0) | 4.9 (3.8) | 3.9 (4.4) | 0.25 | 6.0 (6.1) | 8.0 (7.5) | 4.4 (7.8) | 7.5 (7.8) | 0.19 |
Values are mean (SD) for continuous variables and number (%) for categorical variables.
PD = Parkinson’s disease; MDS-UPDRS = Movement Disorder Society – Unified Parkinson Disease Rating Scale; MoCA = Montreal Cognitive Assessment; REM SBDSQ = Rapid Eye Movement Sleep Behavior Disorder Screening Questionnaire; ESS = Epworth Sleepiness Scale; BDI-II = Beck Depression Inventory-II; SCOPA-AUT = Scales for Outcomes in Parkinson’s Disease – Autonomic Dysfunction.
Matching symbols indicate statistically significant pairwise differences (p < 0.05).
Return of individual research results directly to the participant was not offered and was only provided upon request.