Natural history of Type 1 spinal muscular atrophy: a retrospective, global, multicenter study

Table 3 Sitting ability and head control assessed by HINE-2: ANCHOVY

	M3 (N = 60)	M6 (N = 60)	M9 (N = 60)	M12 (N = 60)	M15 (N = 60)	M18 (N = 60)	M21 (N = 60)	M24 (N = 60)
Sitting, n (%)
0: Cannot sit	25 (42)	19 (32)	8 (13)	9 (15)	5 (8)	5 (8)	4 (7)	5 (8)
1: Sits with support at hips	0	0	1 (2)	0	0	0	0	0
2: Props	0	0	0	0	0	0	0	0
3: Stable sit	0	0	0	0	0	0	0	0
4: Pivots (rotates)	0	0	0	0	0	0	0	0
Not recorded in chart*	5 (8)	3 (5)	0	0	0	0	0	0
Head control, n (%)
0: Unable to maintain upright	26 (43)	14 (23)	8 (13)	9 (15)	5 (8)	5 (8)	4 (7)	5 (8)
1: Wobbles^†	4 (7)	6 (10)	1 (2)	0	0	0	0	0
2: All the time upright	0	1 (2)	0	0	0	0	0	0
Not recorded in chart*	0	1 (2)	0	0	0	0	0	0
Missing^‡,§	30 (50)	34 (57)	35 (58)	26 (43)	27 (45)	27 (45)	28 (47)	27 (45)
Censored^‡,¶	0	1 (2)	1 (2)	2 (3)	2 (3)	2 (3)	2 (3)	2 (3)
Death^‡,**	0	3 (5)	15 (25)	23 (38)	26 (43)	26 (43)	26 (43)	26 (43)

There was no consistent assessment schedule that patients followed during the course of medical care and as such, most time points have sparse data for HINE-2 assessments. No patients achieved any level of sitting or head control after 24 months of age
*Hospital record exists at this time, but no mention of this motor milestone
^†The 11 observations of wobbles were reported for eight patients overall, with some patients achieving this milestone at multiple time points
^‡Applies to both sitting and head control data
^§No records for this time period
^¶Patient was excluded from study at time points after starting treatment (nusinersen) or after enrollment in a clinical trial
**Patient died before the beginning of this time period
HINE-2, Hammersmith Infant Neurological Examination, Section 2; M, month

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