Table 1 Demographic and clinical characteristics by DSRD and DSN groups

Demographics

Age (years)^*

20.13 (7.38)

16.05 (5.25)

18.60 (6.94)

< 0.001

Sex at birth

 Female

111 (48.7%)

60 (43.8%)

171 (46.8%)

0.365

 Male

117 (51.3%)

77 (56.2%)

194 (53.2%)

Ethnicity †

 Non-Hispanic

168 (73.7%)

95 (69.3%)

263 (72.1%)

0.371

 Hispanic

60 (26.3%)

42 (30.7%)

102 (27.9%)

Race †

 White

170 (74.6%)

100 (73.0%)

270 (74.0%)

0.782

 Black/African American

32 (14.0%)

19 (13.9%)

51 (14.0%)

 Asian

17 (7.5%)

13 (9.5%)

30 (8.2%)

 Native American/Alaskan Native

7 (3.1%)

5 (3.6%)

12 (3.3%)

 Hawaiian or Pacific Islander

2 (0.9%)

0 (0.0%)

2 (0.5%)

Duration of symptoms (years)

4.37 (3.80)

4.59 (2.19)

4.45 (3.29)

0.540

PedsQL

 Physical functioning score^*

41.26 (19.56)

70.65 (8.41)

52.29 (21.63)

< 0.001

 Emotional functioning score^*

31.43 (18.26)

67.19 (9.94)

44.85 (23.36)

< 0.001

 Social functioning score^*

28.43 (21.06)

61.45 (9.24)

40.82 (23.77)

< 0.001

 Cognitive functioning score ^*

46.49 (22.48)

75.40 (10.50)

57.34 (23.51)

< 0.001

 Communication score ^*

31.80 (20.47)

60.04 (10.26)

42.40 (22.10)

< 0.001

 Worry score ^*

20.00 (17.36)

46.75 (9.21)

30.04 (19.70)

< 0.001

 Daily activities score ^*

24.42 (19.33)

58.64 (10.57)

37.26 (23.45)

< 0.001

 Family relationships score ^*

45.09 (24.81)

55.18 (7.98)

48.88 (20.77)

< 0.001

 Total score^*

34.58 (13.68)

62.45 (3.90)

45.04 (17.47)

< 0.001

 The parent HRQL summary score^*

37.54 (15.34)

69.13 (5.44)

49.40 (19.81)

< 0.001

 The family functioning summary score^*

37.34 (19.00)

56.48 (5.89)

44.52 (18.01)

< 0.001

Zarit caregiver burden total score^*

30.92 (7.92)

22.62 (2.53)

27.80 (7.59)

< 0.001

Glasgow depression score^*

13 [0, 17]

11 [10, 12]

12 [8, 15]

0.0097

Glasgow depression score categories^*

 Total score < 13

106 (46.5%)

110 (80.3%)

216 (59.2%)

< 0.001

 Total score ≥ 13

122 (53.5%)

27 (19.7%)

149 (40.8%)

Disease characteristics of DSRD patients

Movement disorder

160 (70.2%)

Altered mental status

162 (71.1%)

Cognitive decline

112 (49.1%)

Focal neurologic deficits/seizure

11 (4.8%)

Insomnia

150 (65.8%)

Language deficits

159 (69.7%)

Psychiatric symptoms

153 (67.1%)

Total symptoms

4.98 (1.51

Neurological Conditions of DSN Cohort

Autism Spectrum Disorder (ASD)

69 (51%)

Epilepsy/Infantile Spasms

39 (28%)

Moyamoya Vasculopathy/Stroke

16 (12%)

Deafness

13 (9%)