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 3/31/2023

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 Unique
Patients1		 Multi-year
Patients2
# HTCs contributing data 125 130** 133 134 136*** 138 140 138 141 140 136 128 146 147
# of patients 25441 26751 30036 31326 32719 35923 37119 39864 38376 42258 43157 8320 127417 73763
Age (years) <2 796 853 1030 1108 1194 1223 1151 1226 1246 1305 1218 191 5100 826
2–10 5710 5752 6165 6364 6459 6776 6802 7012 6455 6894 6891 1477 17973 10857
11–19 7053 7367 8103 8411 9043 9656 9856 10520 9691 10801 11172 2096 33114 20003
20–44 7014 7225 8300 8692 9048 9995 10613 11329 11459 12724 13108 2607 37740 23877
45–64 3566 3954 4562 4721 4783 5487 5638 6191 5937 6540 6559 1174 20707 11149
65+ 1302 1600 1876 2030 2192 2786 3059 3586 3588 3994 4209 775 12783 7051
Sex† Male 16928 17374 19275 20049 20705 22093 22728 23845 22800 24654 24948 4992 64646 41387
Female 8513 9377 10761 11277 12014 13830 14391 16019 15576 17604 18209 3328 62771 32376
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4403 4651 5188 5641 5746 6210 5863 6588 6944 1419 18224 11256
Not Hispanic, Latino/a, or Spanish origin 21463 22685 25286 26150 27062 29727 30586 32457 31165 34112 34808 6647 104814 60999
Unknown 209 256 347 525 469 555 787 1197 1348 1558 1405 254 4379 1508
Race American Indian/Alaska Native 175 168 184 239 262 282 305 293 286 293 323 57 857 537
Asian 745 770 906 998 1049 1115 1145 1252 1198 1371 1467 294 3513 2210
Black or African American 2932 3083 3613 3731 3847 4115 4276 4524 4607 5046 5042 1022 15479 8653
Native Hawaiian or other Pacific Islander 112 95 101 118 124 117 119 109 120 130 157 26 373 251
White 21167 22208 24461 25261 26184 28734 29275 31072 29479 32112 32772 6222 98556 57962
More than one of these 185 248 306 341 376 392 466 477 443 551 601 127 1342 901
Unknown 125 179 465 638 877 1168 1533 2137 2243 2755 2795 572 7297 3249
Insurance Status Insured 24081 25616 28852 30247 31597 34563 35690 38324 36852 40443 41677 8204 123107 71132
Uninsured 921 899 959 863 887 1069 1046 1083 1023 955 998 94 2832 1710
Unknown 439 236 225 216 235 291 383 457 501 860 482 22 1478 921
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 6 6 * * * 13 6
Bernard Soulier syndrome 19 20 21 31 31 25 29 29 41 38 48 13 102 73
Blood coagulation disorder without specific diagnosis 184 306 301 355 363 373 385 484 396 495 495 91 2673 743
Ehlers-Danlos syndrome 45 46 56 49 71 92 100 125 126 140 155 35 545 227
Factor I, hereditary 57 78 75 87 93 101 114 144 149 199 203 31 493 287
Factor II, hereditary 18 19 18 24 29 29 34 42 42 42 32 * 132 62
Factor IX, hereditary 2856 2824 3196 3179 3305 3535 3591 3583 3513 3762 3897 784 7616 6090
Factor V, hereditary 93 108 111 106 113 132 107 104 130 146 166 24 669 216
Factor VII, hereditary 454 468 498 562 615 710 747 822 849 1029 1052 201 3188 1755
Factor VIII, hereditary 9470 9317 10278 10503 11001 11660 11756 12299 11659 12478 12612 2794 23436 19303
Factor X, hereditary 66 60 68 72 81 91 90 105 116 133 157 17 348 206
Factor XI, hereditary 276 246 306 344 362 394 422 442 406 504 530 80 1921 901
Factor XIII, hereditary 68 73 88 92 102 118 102 115 120 137 149 40 298 184
Factors V & VIII, combined 10 6 10 7 * 13 12 8 10 11 6 * 26 22
Glanzmann thrombasthenia 115 109 127 130 134 148 143 161 151 156 160 28 347 268
Gray platelet syndrome * * * * * * 9 * * 6 * * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 45 40 55 51 32 39 50 * 142 87
PAI-1 deficiency 104 83 56 64 86 71 84 86 53 72 95 12 399 197
Platelet function disorder, hereditary (nonspecific) 622 638 735 883 911 1052 1044 1171 1113 1329 1366 228 4364 2597
Platelet release defect 17 23 24 18 22 15 19 17 7 16 14 * 56 37
Platelet storage pool disease 710 801 922 899 974 1000 998 1002 873 919 916 153 3814 2355
Thrombocytopenia, hereditary 129 105 110 149 133 200 191 289 210 210 177 49 1089 368
Venous Thromboembolism (VTE) 3525 4894 6055 6548 6614 7927 8545 9392 9601 10068 9963 1634 43391 17486
Von Willebrand disease type 2, type unknown 84 119 141 166 167 161 158 165 155 189 194 37 547 353
Von Willebrand disease, type 1 5156 5065 5269 5384 5775 6064 6281 6899 6458 7560 8108 1586 25012 15899
Von Willebrand disease, type 1C 18 24 26 36 28 34 47 53 63 71 75 13 142 116
Von Willebrand disease, type 2A 333 338 363 407 437 473 499 513 529 564 590 108 1266 997
Von Willebrand disease, type 2B 202 192 226 230 239 269 279 298 271 298 292 64 716 555
Von Willebrand disease, type 2M 155 175 212 221 233 251 230 301 223 345 318 55 741 576
Von Willebrand disease, type 2N 39 45 54 54 63 66 67 72 68 81 81 9 221 156
Von Willebrand disease, type 3 225 229 250 258 255 266 278 269 276 294 300 64 512 434
Von Willebrand disease, type other 37 26 41 43 52 73 100 126 96 120 103 21 391 191
Von Willebrand disease, unknown 326 279 362 396 375 533 599 686 630 802 847 138 2788 1008
History of HCV infection Yes 3022 2898 3186 3255 3227 3246 3271 3196 2952 3031 2982 648 5825 5134
No 14613 14468 16421 17043 18718 20356 21019 22374 21445 24818 26319 5468 63116 43567
Unknown 4281 4491 4374 4480 4160 4394 4284 4902 4378 4341 3893 570 15085 7576
Not Applicable‡ 3525 4894 6055 6548 6614 7927 8545 9392 9601 10068 9963 1634 43391 17486
History of HIV infection Yes 925 876 944 920 915 907 913 912 855 859 859 179 1675 1459
No 16383 16174 18405 19141 20825 22488 23242 24483 23363 26854 28287 5922 66914 46950
Unknown 4608 4807 4632 4717 4365 4601 4419 5077 4557 4477 4048 585 15437 7868
Not Applicable‡ 3525 4894 6055 6548 6614 7927 8545 9392 9601 10068 9963 1634 43391 17486

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 41 transgender individuals. For confidentiality purposes, the number of transgender patients is too small to report by year or other characteristics. Transgender 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 greater than zero but less than five 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.

Pages in this Report

  1. HTC Population Profile
  2. ›HTC Population Profile Patient Characteristics
  3. Factor VIII and Factor IX
  4. von Willebrand Disease (VWD)
  5. Rare Factor Deficiencies
  6. Platelet Disorders
  7. Other Disorders
  8. Geographic Distribution of Males with Hemophilia A or B
  9. Geographic Distribution of Females with Hemophilia A or B
  10. Geographic Distribution of Persons with von Willebrand Disease