Table 1. Distribution of cohort... | American Society of Hematology

Table 1.

Distribution of cohort characteristics

Variable	Category	Overall cohort			ECD cohort			LCH cohort			RDD cohort			Cohort with other HNs
Variable	Category	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)
Age at histiocytosis diagnosis	Years	215	100	51.2 (0.4-76.9)	138	100	53.6 (8.1-76.9)	30	100	37.3 (0.4-61.6)	19	100	46 (23.3-69.8)	28	100	44.8 (20-69.2)
Age at registry enrollment	Years	215	100	54.7 (18.9-80)	138	100	56.6 (18.9-80.0)	30	100	45.8 (24.4-66.8)	19	100	48.5 (23.5-71.2)	28	100	50.5 (22.7-74.3)
Diagnosis	ECD	138	64		138	100		0	0		0	0		0	0
	LCH	30	14		0	0		30	100		0	0		0	0
	RDD	19	9		0	0		0	0		19	100		0	0
	Xanthogranuloma-family	7	3		0	0		0	0		0	0		7	25
	Histiocytic sarcoma	1	0.5		0	0		0	0		0	0		1	4
	Mixed ECD/LCH	15	7		0	0		0	0		0	0		15	54
	Mixed ECD/RDD	4	2		0	0		0	0		0	0		4	14
	Other	1	0.5		0	0		0	0		0	0		1	4
Sex	Female	99	46		57	41		19	63		12	63		11	39
	Male	116	54		81	59		11	37		7	37		17	61
Length of undiagnosed illness	Years	215	100	0.68 (0-20.6)	138	100	0.8 (0-20.6)	30	100	0.4 (0-10.3)	19	100	0.6 (0.02-17.6)	28	100	0.5 (0-9.7)
Length of diagnosed illness	Years	215	100	4.9 (0.08-42.3)	138	100	5.1 (0.2-38.8)	30	100	6.6 (0.2-42.3)	19	100	2.8 (0.2-18.3)	28	100	4.3 (0.08-29.2)
Sites of disease	Bone	175	81		126	91		19	63		8	42		22	79
	Neurologic	129	60		95	69		13	43		5	26		16	57
	Brain/parenchyma	95	44		78	57		11	37		1	5		5	18
	Cardiovascular	73	34		66	48		0	0		0	0		7	25
	Pulmonary	38	18		27	20		8	27		1	5		2	7
	Retroperitoneum	84	39		74	54		0	0		4	21		6	21
	Abdomen	37	17		22	16		2	7		6	32		7	25
	Skin	59	17		28	20		9	30		8	42		14	50
	Lymph node	27	13		11	8		5	17		9	47		2	7
	Other	36	17		18	13		5	17		6	32		7	25
Comorbidities	Hypertension	92	43		68	49		24	80		9	47		20	71
	Diabetes	40	19		19	14		27	90		8	42		21	75
Has a caregiver	No	128	60		75	54		25	83		14	50		14	74
	Yes	87	40		63	46		5	17		14	50		5	26
Employment at enrollment	Full-time	91	42		47	34		16	53		12	63		16	57
	Part-time	27	13		14	10		6	20		3	16		4	14
	Unemployed	42	20		32	23		4	13		2	11		4	14
	Retired	53	25		44	32		3	10		2	11		4	14
	Unknown	2	1		1	1		1	3		0	0		0	0
Employment at 12 mo (n = 123)	Full-time	37	30		30	27		N/A	N/A		N/A	N/A		7	58
	Part-time	9	7		8	7		N/A	N/A		N/A	N/A		1	8
	Unemployed	29	24		26	23		N/A	N/A		N/A	N/A		3	25
	Retired	46	37		45	41		N/A	N/A		N/A	N/A		1	8
	Unknown	2	2		2	2		N/A	N/A		N/A	N/A		0	0
Treatment at enrollment	None	84	39		43	31		20	67		9	47		12	43
	Conventional	17	8		13	9		0	0		0	0		4	14
	Targeted	113	53		82	59		10	33		10	53		11	39
	Unknown	1	0.5		0	0		0	0		0	0		1	4
Treatment at 12 mo (n = 123)	None	27	22		24	22		N/A	N/A		N/A	N/A		3	25
	Conventional	9	7		8	7		N/A	N/A		N/A	N/A		1	8
	Targeted	78	63		72	65		N/A	N/A		N/A	N/A		6	50
	Other∗	2	2		2	2		N/A	N/A		N/A	N/A		0	0
	Unknown	7	6		5	5		N/A	N/A		N/A	N/A		2	17

Variable	Category	Overall cohort			ECD cohort			LCH cohort			RDD cohort			Cohort with other HNs
Variable	Category	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)	n	%	Median (range)
Age at histiocytosis diagnosis	Years	215	100	51.2 (0.4-76.9)	138	100	53.6 (8.1-76.9)	30	100	37.3 (0.4-61.6)	19	100	46 (23.3-69.8)	28	100	44.8 (20-69.2)
Age at registry enrollment	Years	215	100	54.7 (18.9-80)	138	100	56.6 (18.9-80.0)	30	100	45.8 (24.4-66.8)	19	100	48.5 (23.5-71.2)	28	100	50.5 (22.7-74.3)
Diagnosis	ECD	138	64		138	100		0	0		0	0		0	0
	LCH	30	14		0	0		30	100		0	0		0	0
	RDD	19	9		0	0		0	0		19	100		0	0
	Xanthogranuloma-family	7	3		0	0		0	0		0	0		7	25
	Histiocytic sarcoma	1	0.5		0	0		0	0		0	0		1	4
	Mixed ECD/LCH	15	7		0	0		0	0		0	0		15	54
	Mixed ECD/RDD	4	2		0	0		0	0		0	0		4	14
	Other	1	0.5		0	0		0	0		0	0		1	4
Sex	Female	99	46		57	41		19	63		12	63		11	39
	Male	116	54		81	59		11	37		7	37		17	61
Length of undiagnosed illness	Years	215	100	0.68 (0-20.6)	138	100	0.8 (0-20.6)	30	100	0.4 (0-10.3)	19	100	0.6 (0.02-17.6)	28	100	0.5 (0-9.7)
Length of diagnosed illness	Years	215	100	4.9 (0.08-42.3)	138	100	5.1 (0.2-38.8)	30	100	6.6 (0.2-42.3)	19	100	2.8 (0.2-18.3)	28	100	4.3 (0.08-29.2)
Sites of disease	Bone	175	81		126	91		19	63		8	42		22	79
	Neurologic	129	60		95	69		13	43		5	26		16	57
	Brain/parenchyma	95	44		78	57		11	37		1	5		5	18
	Cardiovascular	73	34		66	48		0	0		0	0		7	25
	Pulmonary	38	18		27	20		8	27		1	5		2	7
	Retroperitoneum	84	39		74	54		0	0		4	21		6	21
	Abdomen	37	17		22	16		2	7		6	32		7	25
	Skin	59	17		28	20		9	30		8	42		14	50
	Lymph node	27	13		11	8		5	17		9	47		2	7
	Other	36	17		18	13		5	17		6	32		7	25
Comorbidities	Hypertension	92	43		68	49		24	80		9	47		20	71
	Diabetes	40	19		19	14		27	90		8	42		21	75
Has a caregiver	No	128	60		75	54		25	83		14	50		14	74
	Yes	87	40		63	46		5	17		14	50		5	26
Employment at enrollment	Full-time	91	42		47	34		16	53		12	63		16	57
	Part-time	27	13		14	10		6	20		3	16		4	14
	Unemployed	42	20		32	23		4	13		2	11		4	14
	Retired	53	25		44	32		3	10		2	11		4	14
	Unknown	2	1		1	1		1	3		0	0		0	0
Employment at 12 mo (n = 123)	Full-time	37	30		30	27		N/A	N/A		N/A	N/A		7	58
	Part-time	9	7		8	7		N/A	N/A		N/A	N/A		1	8
	Unemployed	29	24		26	23		N/A	N/A		N/A	N/A		3	25
	Retired	46	37		45	41		N/A	N/A		N/A	N/A		1	8
	Unknown	2	2		2	2		N/A	N/A		N/A	N/A		0	0
Treatment at enrollment	None	84	39		43	31		20	67		9	47		12	43
	Conventional	17	8		13	9		0	0		0	0		4	14
	Targeted	113	53		82	59		10	33		10	53		11	39
	Unknown	1	0.5		0	0		0	0		0	0		1	4
Treatment at 12 mo (n = 123)	None	27	22		24	22		N/A	N/A		N/A	N/A		3	25
	Conventional	9	7		8	7		N/A	N/A		N/A	N/A		1	8
	Targeted	78	63		72	65		N/A	N/A		N/A	N/A		6	50
	Other∗	2	2		2	2		N/A	N/A		N/A	N/A		0	0
	Unknown	7	6		5	5		N/A	N/A		N/A	N/A		2	17

N/A, not applicable.

∗

Pembrolizumab, imatinib.

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