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 9/29/2023

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*** 138 140 139 142 140 136 133 147 147
# of patients 25441 26751 30038 31326 32719 35925 37127 39882 38406 42344 43510 27741 131451 76618
Age (years) <2 796 853 1030 1108 1194 1223 1152 1227 1246 1308 1226 618 5184 837
2–10 5710 5752 6165 6364 6460 6778 6803 7014 6461 6911 6945 4541 18318 11089
11–19 7053 7367 8104 8411 9043 9656 9859 10523 9699 10817 11275 7047 34060 20714
20–44 7014 7225 8302 8692 9047 9995 10616 11337 11471 12759 13209 8618 39129 24930
45–64 3566 3954 4563 4721 4784 5488 5639 6193 5941 6551 6613 4139 21396 11558
65+ 1302 1600 1874 2030 2191 2785 3058 3588 3588 3998 4242 2778 13364 7490
Sex† Male 16928 17374 19278 20049 20703 22092 22728 23852 22811 24702 25142 16382 66344 42683
Female 8513 9377 10760 11277 12016 13833 14399 16030 15595 17642 18368 11359 65107 33935
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4403 4651 5189 5642 5747 6212 5865 6603 7015 4434 18864 11712
Not Hispanic, Latino/a, or Spanish origin 21463 22685 25288 26150 27061 29728 30592 32472 31193 34178 35076 22523 108079 63346
Unknown 209 256 347 525 469 555 788 1198 1348 1563 1419 784 4508 1560
Race American Indian/Alaska Native 175 168 184 239 262 282 305 293 286 294 329 213 892 552
Asian 745 770 906 998 1049 1115 1145 1252 1198 1371 1472 950 3634 2309
Black or African American 2932 3083 3612 3732 3847 4115 4277 4528 4612 5055 5097 3287 16023 9001
Native Hawaiian or other Pacific Islander 112 95 101 118 124 117 119 109 120 130 157 95 376 254
White 21167 22208 24464 25260 26184 28736 29281 31085 29502 32180 33040 21078 101519 60103
More than one of these 185 248 306 341 376 392 466 477 443 551 601 415 1397 947
Unknown 125 179 465 638 877 1168 1534 2138 2245 2763 2814 1703 7610 3452
Insurance Status Insured 24081 25616 28854 30247 31597 34565 35697 38339 36880 40527 42025 26850 127126 74002
Uninsured 921 899 959 863 887 1069 1046 1084 1025 956 1002 797 2977 1820
Unknown 439 236 225 216 235 291 384 459 501 861 483 94 1348 796
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * * * * * 13 7
Bernard Soulier syndrome 19 20 21 31 31 25 29 29 41 38 48 32 106 75
Blood coagulation disorder without specific diagnosis 184 306 302 357 364 373 386 485 398 497 507 329 2797 802
Ehlers-Danlos syndrome 45 46 56 49 71 92 100 125 128 143 162 100 568 247
Factor I, hereditary 57 78 75 87 93 101 114 144 149 199 203 111 515 299
Factor II, hereditary 18 19 18 24 29 29 34 42 42 42 33 25 140 64
Factor IX, hereditary 2856 2824 3197 3179 3304 3535 3591 3588 3515 3766 3935 2687 7763 6242
Factor V, hereditary 93 108 111 106 113 132 108 105 130 148 169 91 698 232
Factor VII, hereditary 454 468 498 562 615 710 748 822 851 1031 1065 698 3337 1851
Factor VIII, hereditary 9470 9317 10279 10504 11000 11661 11757 12305 11664 12508 12712 8709 23867 19712
Factor X, hereditary 66 60 68 72 81 91 90 105 116 133 159 81 362 219
Factor XI, hereditary 276 246 306 344 362 395 422 442 408 505 532 338 2004 962
Factor XIII, hereditary 68 73 88 92 102 118 102 115 120 137 148 91 301 193
Factors V & VIII, combined 10 6 10 7 * 13 12 8 10 11 6 * 26 22
Glanzmann thrombasthenia 115 109 127 130 134 148 143 161 151 156 162 92 353 277
Gray platelet syndrome * * * * * * * * * * * * 20 10
Hermansky-Pudlak syndrome 23 32 31 22 45 40 55 51 32 39 51 28 145 89
PAI-1 deficiency 104 83 56 64 86 71 84 86 53 73 98 74 415 218
Platelet function disorder, hereditary (nonspecific) 622 638 734 881 910 1052 1044 1171 1114 1337 1384 849 4533 2760
Platelet release defect 17 23 24 18 22 15 19 17 7 16 14 7 57 39
Platelet storage pool disease 710 801 923 901 975 1000 998 1002 873 918 922 619 3913 2453
Thrombocytopenia, hereditary 129 105 110 149 133 200 191 290 211 211 178 94 1107 383
Venous Thromboembolism (VTE) 3525 4894 6057 6548 6615 7928 8550 9397 9612 10086 10037 5756 44956 18299
Von Willebrand disease type 2, type unknown 84 120 141 166 167 162 159 166 155 189 193 114 560 358
Von Willebrand disease, type 1 5153 5062 5265 5382 5775 6062 6280 6897 6461 7573 8162 5246 25936 16648
Von Willebrand disease, type 1C 21 26 29 36 29 35 48 54 64 72 77 46 150 121
Von Willebrand disease, type 2A 333 338 363 407 437 472 498 514 529 564 598 370 1307 1029
Von Willebrand disease, type 2B 202 192 226 230 239 269 279 298 271 299 294 197 728 560
Von Willebrand disease, type 2M 155 175 213 222 233 253 230 302 224 347 320 238 787 603
Von Willebrand disease, type 2N 39 45 54 54 63 66 67 72 68 81 81 54 231 163
Von Willebrand disease, type 3 225 228 249 256 254 265 279 268 274 294 299 186 521 444
Von Willebrand disease, type other 37 26 41 43 51 72 99 126 96 120 103 51 390 191
Von Willebrand disease, unknown 326 280 360 396 376 533 598 684 629 800 852 418 2845 1046
History of HCV infection Yes 3022 2898 3186 3255 3227 3246 3272 3199 2956 3043 3009 2022 5886 5179
No 14613 14469 16424 17045 18720 20360 21023 22382 21457 24869 26543 17746 65321 45419
Unknown 4281 4490 4371 4478 4157 4391 4282 4904 4381 4346 3921 2217 15288 7721
Not Applicable‡ 3525 4894 6057 6548 6615 7928 8550 9397 9612 10086 10037 5756 44956 18299
History of HIV infection Yes 925 876 944 920 915 907 914 913 856 864 869 582 1689 1467
No 16383 16175 18408 19143 20827 22492 23246 24494 23379 26914 28528 19110 69168 48830
Unknown 4608 4806 4629 4715 4362 4598 4417 5078 4559 4480 4076 2293 15638 8022
Not Applicable‡ 3525 4894 6057 6548 6615 7928 8550 9397 9612 10086 10037 5756 44956 18299

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 39 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. On 8/10/2020, the responses for this question changed such that “Male to Female” and “Female to Male” (i.e., transsexual) were removed and “Intersex” was added. The number of intersex patients is too small to report by year or other characteristics; therefore, these counts have been excluded to protect patient confidentiality.

‡ 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