Table 1

Xeroderma pigmentosum patients at the National Institutes of Health, 1971–2009

	Total	Gender		Race/ethnicity
	Total	Male	Female	NHW	African/AA	Asian	HW	NA
Total	106	48	58	78	16	4	6	2
Age at last observation/age at death
Mean	28	27	28	30	24	16	21	23
Median	26	22	28	29	22	17	16	23
Youngest	1	4	1	1	5	8	7	14
Oldest	73	73	57	73	57	21	45	31

Burning phenotype
Always/sometimes	65	24	41	52	9	1	3	0
Never	38	23	15	25	5	3	3	2
Unknown	3	1	2	1	2	0	0	0

Complementation group (phenotype)
A (XP)	10	5	5	6	3	1	0	0
B (XP/CS)	1	0	1	1	0	0	0	0
C (XP)	46	24	22	28	8	3	5	2
D (XP)	23	8	15	18	3	0	1	0
D (XP/TTD)	7	3	4	7	0	0	0	0
E (XP)	3	1	2	3	0	0	0	0
G (XP)	2	1	1	1	1	0	0	0
G (XP/CS)	1	1	0	1	0	0	0	0
Variant (XP)	7	4	3	7	0	0	0	0
Unknown^* (XP)	6	1	5	5	1	0	0	0

Skin cancer?
Yes	69	31	38	52	7	4	4	2
No	33	15	18	22	9	0	2	0
Unknown	4	2	2	4	0	0	0	0

Type of skin cancer
NMSC	64	29	35	47	7	4	4	2
Melanoma	38	20	18	34	0	1	2	1

Neurologic phenotype
Degeneration present	25	12	13	21	4	0	0	0
No degeneration	70	31	39	50	9	3	6	2
Non-XP neuro abnormality	10	5	5	6	3	1	0	0
Unknown	1	1	1	1	0	0	0	0

↵* Six patients were tested for complementation groups and did not have A, B, C, D, E, F, G, ERCC1 or variant defects.
AA, African Americans; CS, Cockayne syndrome; HW, Hispanic whites; NA, native Americans; NHW, non-Hispanic whites; NMSC, non-melanoma skin cancer; TTD, trichothiodystrophy; XP, xeroderma pigmentosum; XP/CS, xeroderma pigmentosum/Cockayne syndrome complex.