HTC Population Profile Patient Characteristics

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Table 1. HTC Population Profile Patient Characteristics by Calendar Year, Data Reported From 1/1/2012 Through 3/31/2018

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 Unique
patients1		 Multi-year
patients2
# HTCs contributing data 125 130** 132 134 136*** 137 125 140 136
# of patients 25440 26725 29985 31052 32430 33955 9032 76950 43256
Age (years) <2 806 858 1043 1110 1195 1145 259 2912 520
2-10 5708 5748 6154 6323 6420 6389 1798 12912 7812
11-19 7057 7364 8085 8331 8975 9131 2380 20495 12449
20-44 7005 7207 8280 8617 8969 9447 2499 22029 13145
45-64 3561 3948 4552 4674 4720 5209 1363 12430 6257
65+ 1303 1600 1871 1997 2151 2634 733 6172 3073
Sex† Male 16926 17365 19241 19881 20543 20913 5791 42520 27124
Female 8514 9360 10744 11171 11887 13042 3241 34430 16132
Ethnicity Hispanic, Latino/a, or Spanish origin 3736 3774 4350 4547 5089 5272 1508 10682 6548
Not Hispanic, Latino/a, or Spanish origin 21498 22696 25258 25899 26809 28096 7408 64993 36296
Unknown 206 255 377 606 532 587 116 1275 412
Race American Indian/Alaska Native 178 169 189 236 262 266 54 516 313
Asian 715 748 885 977 1025 1055 271 2064 1310
Black or African American 2917 3068 3587 3688 3814 3906 1157 8916 5045
Native Hawaiian or other Pacific Islander 115 95 105 127 130 121 19 259 163
White 21325 22289 24503 25036 25914 27062 7107 62287 35128
More than one of these 87 148 207 301 330 367 133 693 451
Unknown 103 208 509 687 955 1178 291 2215 846
Insurance Status Insured 24086 25596 28810 29985 31327 32682 8768 74244 41748
Uninsured 917 897 955 858 879 1002 215 2081 1219
Unknown 437 232 220 209 224 271 49 625 289
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 6 *
Bernard Soulier syndrome 19 21 23 33 32 23 9 53 39
Blood coagulation disorder without specific diagnosis 185 307 300 355 355 344 66 1354 311
Ehlers-Danlos syndrome 45 43 56 50 69 90 14 224 72
Factor I, hereditary 57 76 73 85 92 101 16 223 133
Factor II, hereditary 18 18 19 23 28 24 * 68 27
Factor IX, hereditary 2846 2812 3178 3149 3285 3329 904 5717 4397
Factor V, hereditary 98 109 120 109 112 133 24 425 130
Factor VII, hereditary 459 472 497 553 606 664 165 1670 831
Factor VIII, hereditary 9467 9291 10259 10422 10924 11087 3211 17979 14217
Factor X, hereditary 68 59 68 70 80 87 17 185 98
Factor XI, hereditary 277 251 313 341 362 369 89 1069 456
Factor XIII, hereditary 71 85 99 103 108 116 20 194 128
Factors V & VIII, combined * * * * * * * 21 *
Glanzmann thrombasthenia 114 108 124 126 129 138 31 239 180
Gray platelet syndrome * * * * * * * 13 *
Hermansky-Pudlak syndrome 21 31 32 20 35 25 11 89 40
PAI-1 deficiency 106 83 53 61 87 67 25 276 99
Platelet function disorder, hereditary (nonspecific) 630 634 727 848 896 983 250 2456 1285
Platelet release defect 17 26 28 21 23 15 * 46 31
Platelet storage pool disease 699 796 914 898 978 971 256 2664 1491
Thrombocytopenia, hereditary 129 111 112 152 128 181 46 550 161
Venous Thromboembolism (VTE) 3527 4885 6044 6473 6520 7463 2018 22095 7867
Von Willebrand disease, type 1 5175 5084 5279 5353 5719 5719 1352 15115 8751
Von Willebrand disease, type 1C 10 15 23 35 27 32 11 61 46
Von Willebrand disease, type 2A 329 338 344 386 426 442 112 835 602
Von Willebrand disease, type 2B 197 193 214 220 235 254 65 485 348
Von Willebrand disease, type 2M 150 171 206 210 224 234 54 426 315
Von Willebrand disease, type 2N 37 45 53 53 63 61 19 136 91
Von Willebrand disease, type 2, type unknown 83 112 159 191 192 164 48 403 247
Von Willebrand disease, type 3 232 231 249 259 252 249 84 416 335
Von Willebrand disease, type other 41 28 40 46 54 65 19 168 70
Von Willebrand disease, unknown 319 279 363 392 377 506 89 1289 436
History of HCV infection Yes 3034 2885 3173 3209 3194 3078 926 5155 4347
No 14623 14111 15720 16676 18021 18878 5004 37921 25145
Unknown 4256 4844 5048 4694 4695 4536 1084 11779 5897
Not Applicable‡ 3527 4885 6044 6473 6520 7463 2018 22095 7867
History of HIV infection Yes 941 881 964 956 941 886 269 1476 1263
No 16413 15741 17579 18708 20047 20850 5614 41157 27883
Unknown 4559 5218 5398 4915 4922 4756 1131 12222 6243
Not Applicable‡ 3527 4885 6044 6473 6520 7463 2018 22095 7867

Note. Factor VIII, hereditary refers to hemophilia A; Factor IX, hereditary refers to hemophilia B.

1 “Unique patients” is the total number of individual patients reported by the HTCs since January 2012. This includes individuals reported in only a single calendar year, as well as those reported in more than one calendar year. Individuals reported in more than one calendar year were counted only once in this column.

2 “Multi-year patients” is the total number of individual patients who were reported by the HTCs in more than one calendar year since January 2012. Patients reported in only a single calendar year are not included in this count.

† The HTC Population Profile contains 33 transsexual individuals. For confidentiality purposes, the number of transsexual patients is too small to report by year or other characteristics. Transsexual patients have been included in the counts of male and female according to the sex assigned to them at birth since hemophilia and von Willebrand disease, the most common congenital bleeding disorders, affect the sexes differently.

‡ HCV and HIV status are not recorded for VTE patients.

* Counts of five or fewer have been suppressed to protect patient confidentiality. Additional cells may be suppressed to prevent derivation of these counts by subtraction.

** The number of HTCs contributing data for 2013 includes six HTCs that did not contribute data for 2012; two HTCs that contributed data for 2012 did not contribute data for 2013.

*** One HTC contributed data only through 9/30/2016.

Page last reviewed: August 1, 2022
Content source:  National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention