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 3/31/2022

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 Unique
Patients1		 Multi-year
Patients2
# HTCs contributing data 125 130** 133 134 136*** 138 140 138 141 140 125 146 146
# of patients 25443 26753 30036 31322 32715 35917 37100 39828 38267 41723 8339 117118 67551
Age (years) <2 796 854 1030 1108 1194 1223 1150 1225 1240 1285 210 4738 772
2–10 5712 5752 6165 6363 6459 6775 6799 7005 6420 6792 1335 16971 10314
11–19 7052 7367 8103 8410 9042 9654 9850 10511 9663 10695 2131 30450 18510
20–44 7015 7226 8301 8692 9046 9993 10606 11316 11437 12571 2686 34500 21664
45–64 3566 3954 4561 4720 4782 5486 5636 6186 5925 6452 1229 19115 10153
65+ 1302 1600 1876 2029 2192 2786 3059 3585 3582 3928 748 11344 6138
Sex† Male 16930 17375 19275 20047 20705 22092 22723 23826 22732 24381 4951 60257 38604
Female 8513 9378 10761 11275 12010 13825 14377 16002 15535 17342 3388 56861 28947
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4403 4649 5185 5641 5744 6207 5840 6502 1341 16525 10234
Not Hispanic, Latino/a, or Spanish origin 21465 22687 25286 26148 27060 29721 30570 32429 31084 33676 6784 96753 56058
Unknown 209 256 347 525 470 555 786 1192 1343 1545 214 3840 1259
Race American Indian/Alaska Native 175 168 184 239 262 282 304 292 285 286 45 796 482
Asian 745 770 906 998 1049 1115 1145 1252 1197 1354 273 3170 2009
Black or African American 2933 3084 3614 3731 3846 4112 4272 4519 4596 4973 1012 14115 7859
Native Hawaiian or other Pacific Islander 112 95 101 118 124 117 119 109 120 130 29 341 234
White 21168 22209 24460 25258 26182 28732 29261 31046 29397 31728 6373 91252 53504
More than one of these 185 248 306 341 376 392 466 477 441 544 139 1193 798
Unknown 125 179 465 637 876 1167 1533 2133 2231 2708 468 6251 2665
Insurance Status Insured 24083 25618 28854 30243 31593 34557 35672 38289 36750 39918 7988 112760 64865
Uninsured 921 899 958 863 887 1069 1045 1083 1019 949 217 2726 1648
Unknown 439 236 224 216 235 291 383 456 498 856 134 1632 1038
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 6 6 * * 14 *
Bernard Soulier syndrome 19 20 21 31 31 25 29 29 41 37 6 88 62
Blood coagulation disorder without specific diagnosis 184 306 300 355 363 373 385 484 391 483 56 2380 625
Ehlers-Danlos syndrome 45 46 56 49 71 92 100 125 126 135 25 467 199
Factor I, hereditary 57 78 75 87 93 101 114 144 149 199 37 446 251
Factor II, hereditary 18 19 18 24 29 29 34 42 43 42 * 125 57
Factor IX, hereditary 2856 2824 3196 3179 3304 3535 3590 3581 3498 3728 753 7253 5746
Factor V, hereditary 93 108 110 106 113 132 107 104 130 143 19 597 203
Factor VII, hereditary 454 468 498 562 615 708 747 822 849 1013 194 2850 1567
Factor VIII, hereditary 9472 9317 10278 10502 11000 11659 11752 12293 11621 12334 2768 22476 18360
Factor X, hereditary 66 60 68 72 81 91 90 105 115 130 24 310 179
Factor XI, hereditary 276 246 306 344 362 394 422 442 405 493 89 1714 804
Factor XIII, hereditary 68 73 88 92 102 118 103 116 120 136 44 273 173
Factors V & VIII, combined 10 6 10 7 * 13 12 8 9 11 * 24 21
Glanzmann thrombasthenia 115 109 127 130 134 148 143 161 151 154 30 323 249
Gray platelet syndrome * * * * * * 9 * * 6 * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 45 40 55 51 32 39 6 132 73
PAI-1 deficiency 104 83 56 64 86 71 84 86 53 70 12 361 179
Platelet function disorder, hereditary (nonspecific) 622 638 738 884 911 1052 1040 1168 1105 1296 224 3946 2329
Platelet release defect 17 23 24 18 22 15 19 17 7 16 * 54 34
Platelet storage pool disease 710 801 921 898 974 1000 998 1001 873 912 181 3622 2226
Thrombocytopenia, hereditary 129 105 109 149 133 200 191 289 210 207 32 982 342
Venous Thromboembolism (VTE) 3526 4895 6055 6548 6613 7924 8538 9382 9575 9949 1774 39256 15578
Von Willebrand disease type 2, type unknown 84 119 141 167 167 161 158 165 154 187 33 513 316
Von Willebrand disease, type 1 5156 5064 5267 5378 5773 6063 6276 6885 6445 7464 1537 22740 14293
Von Willebrand disease, type 1C 18 24 26 36 28 34 47 53 63 71 16 131 108
Von Willebrand disease, type 2A 333 338 363 406 437 473 498 513 528 558 109 1169 928
Von Willebrand disease, type 2B 202 192 225 229 239 268 278 296 271 294 68 681 519
Von Willebrand disease, type 2M 155 175 212 221 233 251 228 300 223 337 64 670 507
Von Willebrand disease, type 2N 39 45 54 54 63 66 67 72 68 81 9 203 137
Von Willebrand disease, type 3 225 230 251 259 254 266 279 269 275 290 78 489 423
Von Willebrand disease, type other 37 26 41 43 52 73 100 126 96 117 15 358 166
Von Willebrand disease, unknown 325 280 365 399 377 535 603 688 631 787 128 2452 884
History of HCV infection Yes 3021 2897 3186 3254 3226 3246 3269 3195 2947 2996 666 5761 5024
No 14615 14470 16421 17041 18716 20355 21014 22355 21382 24502 5126 57468 39524
Unknown 4281 4491 4374 4479 4160 4392 4279 4896 4363 4276 773 14633 7425
Not Applicable‡ 3526 4895 6055 6548 6613 7924 8538 9382 9575 9949 1774 39256 15578
History of HIV infection Yes 925 876 944 920 915 907 914 913 855 855 185 1628 1414
No 16384 16175 18405 19138 20822 22487 23236 24463 23298 26510 5559 61242 42836
Unknown 4608 4807 4632 4716 4365 4599 4412 5070 4539 4409 821 14992 7723
Not Applicable‡ 3526 4895 6055 6548 6613 7924 8538 9382 9575 9949 1774 39256 15578

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 47 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. 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 August 10, 2020, the responses for this question changed such that “Male to Female” (i.e., transsexual) and “Female to Male” 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 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.

Pages in this Report

  1. Technical Notes
  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