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 9/29/2022

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*** 138 140 138 141 140 133 146 147
# of patients 25442 26752 30036 31325 32717 35918 37102 39839 38315 42072 26455 121055 70083
Age (years) <2 796 853 1030 1108 1194 1223 1150 1225 1240 1296 648 4840 778
2–10 5711 5752 6165 6364 6459 6774 6798 7006 6436 6859 4258 17293 10520
11–19 7052 7367 8103 8410 9043 9654 9851 10513 9681 10753 6837 31440 19096
20–44 7015 7226 8301 8693 9047 9995 10608 11322 11445 12667 8183 35827 22618
45–64 3566 3954 4561 4720 4782 5486 5636 6188 5928 6512 3930 19712 10546
65+ 1302 1600 1876 2030 2192 2786 3059 3585 3585 3985 2599 11943 6525
Sex† Male 16929 17374 19274 20049 20705 22091 22723 23831 22760 24551 15757 61932 39746
Female 8513 9378 10762 11276 12012 13827 14379 16008 15555 17521 10698 59123 30337
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4403 4650 5187 5641 5744 6208 5854 6559 4251 17126 10650
Not Hispanic, Latino/a, or Spanish origin 21464 22686 25286 26150 27060 29722 30572 32439 31117 33964 21440 99936 58088
Unknown 209 256 347 525 470 555 786 1192 1344 1549 764 3993 1345
Race American Indian/Alaska Native 175 168 184 239 262 282 305 293 286 291 181 813 504
Asian 745 770 906 998 1049 1115 1145 1252 1198 1363 891 3281 2080
Black or African American 2932 3083 3613 3731 3847 4113 4273 4520 4599 5021 3069 14645 8137
Native Hawaiian or other Pacific Islander 112 95 101 118 124 117 119 109 120 130 102 354 245
White 21168 22209 24461 25261 26183 28732 29261 31054 29433 31990 20267 94134 55402
More than one of these 185 248 306 341 376 392 466 477 442 550 411 1258 854
Unknown 125 179 465 637 876 1167 1533 2134 2237 2727 1534 6570 2861
Insurance Status Insured 24082 25617 28853 30246 31595 34558 35674 38301 36795 40260 25458 116658 67358
Uninsured 921 899 958 863 887 1069 1045 1082 1019 954 619 2766 1677
Unknown 439 236 225 216 235 291 383 456 501 858 378 1631 1048
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 6 6 * * 15 6
Bernard Soulier syndrome 19 20 21 31 31 25 29 29 41 38 26 94 63
Blood coagulation disorder without specific diagnosis 184 306 300 355 363 372 385 484 392 491 258 2483 664
Ehlers-Danlos syndrome 45 46 56 49 71 92 100 125 126 139 102 502 208
Factor I, hereditary 57 78 75 87 93 101 114 144 149 199 122 455 267
Factor II, hereditary 18 19 18 24 29 29 34 42 43 42 24 131 58
Factor IX, hereditary 2856 2824 3196 3179 3304 3535 3590 3581 3502 3751 2423 7396 5893
Factor V, hereditary 93 108 111 106 113 132 107 104 130 146 80 618 210
Factor VII, hereditary 454 468 498 562 615 708 747 822 850 1023 640 2981 1639
Factor VIII, hereditary 9471 9317 10278 10503 11001 11659 11754 12297 11635 12424 8473 22870 18748
Factor X, hereditary 66 60 68 72 81 91 90 105 116 132 83 325 190
Factor XI, hereditary 276 246 306 344 362 394 422 442 405 501 287 1782 842
Factor XIII, hereditary 68 73 88 92 102 118 102 115 120 137 95 277 174
Factors V & VIII, combined 10 6 10 7 * 13 12 8 9 11 * 25 21
Glanzmann thrombasthenia 115 109 127 130 134 148 143 161 151 156 104 335 258
Gray platelet syndrome * * * * * * 9 * * 6 * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 45 40 55 51 32 39 25 136 78
PAI-1 deficiency 104 83 56 64 86 71 84 86 53 71 35 361 182
Platelet function disorder, hereditary (nonspecific) 622 638 738 885 911 1052 1041 1169 1112 1322 749 4099 2423
Platelet release defect 17 23 24 18 22 15 19 17 7 16 8 52 33
Platelet storage pool disease 710 801 921 898 974 1000 998 1001 873 916 569 3712 2296
Thrombocytopenia, hereditary 129 105 109 149 133 200 191 289 210 209 101 1019 349
Venous Thromboembolism (VTE) 3526 4895 6055 6548 6613 7925 8538 9385 9584 10021 5667 40817 16331
Von Willebrand disease type 2, type unknown 84 119 141 167 167 161 158 165 155 190 118 525 328
Von Willebrand disease, type 1 5156 5064 5267 5380 5774 6064 6277 6890 6454 7525 4950 23659 14982
Von Willebrand disease, type 1C 18 24 26 36 28 34 47 53 63 71 51 136 111
Von Willebrand disease, type 2A 333 338 363 406 437 473 498 513 528 563 358 1207 955
Von Willebrand disease, type 2B 202 192 225 229 239 268 278 296 271 295 170 693 531
Von Willebrand disease, type 2M 155 175 212 221 233 251 228 300 223 342 186 692 532
Von Willebrand disease, type 2N 39 45 54 54 63 66 67 72 68 81 50 210 148
Von Willebrand disease, type 3 225 230 251 259 254 266 279 269 276 291 191 492 427
Von Willebrand disease, type other 37 26 41 43 52 73 100 126 96 119 52 364 177
Von Willebrand disease, unknown 325 279 364 398 377 535 602 687 631 800 452 2573 951
History of HCV infection Yes 3021 2897 3186 3254 3226 3246 3270 3196 2951 3020 2053 5779 5075
No 14614 14469 16421 17043 18718 20354 21015 22360 21414 24723 16584 59763 41232
Unknown 4281 4491 4374 4480 4160 4393 4279 4898 4366 4308 2151 14696 7445
Not Applicable‡ 3526 4895 6055 6548 6613 7925 8538 9385 9584 10021 5667 40817 16331
History of HIV infection Yes 925 876 944 920 915 907 914 914 855 859 591 1646 1436
No 16383 16174 18405 19140 20824 22486 23237 24467 23332 26749 17946 63532 44570
Unknown 4608 4807 4632 4717 4365 4600 4413 5073 4544 4443 2251 15060 7746
Not Applicable‡ 3526 4895 6055 6548 6613 7925 8538 9385 9584 10021 5667 40817 16331

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 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 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. 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