HTC Population Profile Patient Characteristics

Table 1. HTC Population Profile Patient Characteristics by Calendar Year, Data Reported From 1/1/2012 through 9/29/2020

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 2020 Unique
Patients1
Multi-year
Patients2
# HTCs contributing data 125 130** 133 134 136*** 137 140 138 134 143 143
# of patients 25450 26752 30027 31209 32683 34899 36816 39568 22335 100245 57815
Age (years) <2 802 854 1030 1107 1193 1193 1142 1215 577 3849 651
2-10 5712 5750 6163 6348 6449 6582 6748 6963 3857 15358 9396
11-19 7053 7367 8098 8375 9033 9382 9763 10451 5681 26315 16105
20-44 7015 7226 8300 8653 9038 9680 10511 11227 6735 29210 18077
45-64 3566 3955 4560 4703 4779 5348 5608 6143 3443 16358 8633
65+ 1302 1600 1876 2023 2191 2714 3044 3569 2042 9155 4953
Sex Male 16934 17376 19270 19983 20690 21500 22558 23687 13698 52921 34191
Female 8516 9376 10757 11226 11993 13399 14258 15881 8637 47324 23624
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4401 4635 5174 5489 5695 6160 3326 14036 8667
Not Hispanic, Latino/a, or Spanish origin 21472 22686 25279 26050 27040 28868 30345 32224 18330 83504 48338
Unknown 209 256 347 524 469 542 776 1184 679 2705 810
Race American Indian/Alaska Native 175 168 184 238 262 271 299 291 167 684 419
Asian 745 770 906 994 1046 1095 1137 1243 700 2694 1736
Black or African American 2933 3085 3615 3720 3846 4017 4243 4494 2776 11765 6681
Native Hawaiian or other Pacific Islander 112 95 101 118 124 116 118 108 56 287 190
White 21175 22207 24451 25161 26158 27884 29046 30843 17252 79445 46398
More than one of these 185 248 306 342 377 387 460 477 259 964 645
Unknown 125 179 464 636 870 1129 1513 2112 1125 4406 1746
Insurance Status Insured 24090 25617 28846 30131 31562 33585 35404 38054 21320 96449 55585
Uninsured 921 900 958 861 887 1025 1031 1060 658 2577 1555
Unknown 439 235 223 217 234 289 381 454 357 1219 675
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * * 10 *
Bernard Soulier syndrome 19 20 21 31 31 25 28 29 22 77 52
Blood coagulation disorder without specific diagnosis 184 306 300 353 363 361 382 477 206 1973 492
Ehlers-Danlos syndrome 45 46 56 49 71 89 97 120 66 363 140
Factor I, hereditary 57 78 75 87 93 99 113 142 67 323 191
Factor II, hereditary 18 19 18 24 29 26 33 41 23 104 47
Factor IX, hereditary 2857 2826 3196 3174 3302 3426 3575 3561 2179 6653 5241
Factor V, hereditary 93 108 110 106 113 127 107 103 68 508 165
Factor VII, hereditary 454 468 498 557 613 683 740 817 461 2315 1222
Factor VIII, hereditary 9475 9317 10275 10472 10990 11372 11659 12221 7480 20768 16908
Factor X, hereditary 66 60 68 72 81 87 89 105 62 252 146
Factor XI, hereditary 276 246 306 339 362 378 416 440 234 1424 655
Factor XIII, hereditary 68 73 88 93 102 115 99 116 81 231 148
Factors V & VIII, combined 10 6 10 7 * 13 12 8 6 22 18
Glanzmann thrombasthenia 115 109 127 130 134 144 142 161 81 288 226
Gray platelet syndrome * * * * * * 9 * * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 45 39 54 50 17 125 71
PAI-1 deficiency 104 83 53 62 85 68 83 86 31 325 150
Platelet function disorder, hereditary (nonspecific) 622 638 738 873 910 1018 1026 1148 627 3260 1896
Platelet release defect 17 23 24 18 22 15 19 17 * 46 32
Platelet storage pool disease 710 801 921 897 974 987 988 996 553 3302 1928
Thrombocytopenia, hereditary 129 105 109 148 130 195 188 284 96 834 290
Venous Thromboembolism (VTE) 3530 4895 6055 6526 6613 7719 8501 9324 5078 31950 12533
Von Willebrand disease, type 1 5156 5064 5265 5354 5765 5844 6210 6846 3607 19470 11913
Von Willebrand disease, type 1C 18 24 26 36 28 33 47 52 39 102 79
Von Willebrand disease, type 2A 332 338 363 406 435 461 496 508 311 1047 799
Von Willebrand disease, type 2B 202 192 225 226 239 263 276 295 162 618 460
Von Willebrand disease, type 2M 155 175 212 220 233 246 226 297 128 556 423
Von Willebrand disease, type 2N 38 44 53 54 63 61 66 72 36 170 115
Von Willebrand disease, type 2, type unknown 85 119 141 167 168 155 157 165 79 441 272
Von Willebrand disease, type 3 225 230 251 260 252 256 276 269 181 462 398
Von Willebrand disease, type other 37 26 41 43 53 70 99 125 48 290 130
Von Willebrand disease, unknown 325 278 365 397 374 517 599 683 297 1917 663
History of HCV infection Yes 3020 2898 3186 3248 3226 3162 3246 3178 1947 5610 4869
No 14617 14466 16410 16989 18689 19796 20815 22190 12696 49069 33684
Unknown 4283 4493 4376 4446 4155 4222 4254 4876 2614 13616 6729
Not Applicable 3530 4895 6055 6526 6613 7719 8501 9324 5078 31950 12533
History of HIV infection Yes 925 876 943 919 914 880 910 907 577 1588 1380
No 16385 16172 18395 19079 20795 21877 23021 24286 13972 52745 36872
Unknown 4610 4809 4634 4685 4361 4423 4384 5051 2708 13962 7030
Not Applicable 3530 4895 6055 6526 6613 7719 8501 9324 5078 31950 12533

Erratum: The data in this table were updated on November 24, 2020.

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 62 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.