What to know
This table shows data on general patient demographics and clinical characteristics for all diagnoses. To view this table in Excel, download the file above the table.
Table 1
HTC Population Profile Patient Characteristics by Calendar Year, Data Reported from 1/1/2012 through 3/31/2024
Download the table as an Excel file.
2012 | 2013** | 2014 | 2015 | 2016*** | 2017 | 2018 | 2019 | 2020 | 2021 | 2022 | 2023 | 2024**** | Unique Patients1 |
Multi-year Patients2 |
||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
# HTCs contributing data | 125 | 130 | 133 | 134 | 136 | 138 | 140 | 139 | 142 | 140 | 136 | 135 | 123 | 147 | 147 | |
# of patients | 25440 | 26748 | 30037 | 31322 | 32720 | 35927 | 37139 | 39891 | 38419 | 42392 | 43735 | 46376 | 8543 | 138724 | 80681 | |
Age (years) | <2 | 796 | 853 | 1030 | 1108 | 1194 | 1223 | 1152 | 1227 | 1247 | 1314 | 1233 | 1150 | 128 | 5386 | 843 |
2–10 | 5709 | 5752 | 6165 | 6364 | 6460 | 6779 | 6808 | 7017 | 6465 | 6917 | 6986 | 7583 | 1382 | 19101 | 11450 | |
11–19 | 7053 | 7366 | 8104 | 8409 | 9043 | 9657 | 9862 | 10524 | 9701 | 10829 | 11344 | 11966 | 2131 | 35913 | 21818 | |
20–44 | 7014 | 7223 | 8300 | 8690 | 9047 | 9993 | 10617 | 11338 | 11474 | 12777 | 13276 | 13903 | 2693 | 41308 | 26343 | |
45–64 | 3566 | 3954 | 4563 | 4721 | 4785 | 5490 | 5642 | 6195 | 5944 | 6555 | 6642 | 7063 | 1318 | 22588 | 12189 | |
65+ | 1302 | 1600 | 1875 | 2030 | 2191 | 2785 | 3058 | 3590 | 3588 | 4000 | 4254 | 4711 | 891 | 14428 | 8038 | |
Sex† | Male | 16927 | 17371 | 19276 | 20045 | 20704 | 22093 | 22738 | 23858 | 22819 | 24731 | 25266 | 26382 | 4952 | 69336 | 44460 |
Female | 8513 | 9377 | 10761 | 11277 | 12016 | 13834 | 14401 | 16033 | 15600 | 17661 | 18469 | 19994 | 3591 | 69388 | 36221 | |
Ethnicity | Hispanic, Latino/a, or Spanish origin | 3768 | 3809 | 4403 | 4651 | 5190 | 5642 | 5749 | 6213 | 5868 | 6616 | 7075 | 7452 | 1424 | 20090 | 12419 |
Not Hispanic, Latino/a, or Spanish origin | 21463 | 22683 | 25287 | 26146 | 27061 | 29730 | 30601 | 32480 | 31203 | 34210 | 35235 | 37562 | 6922 | 113887 | 66596 | |
Unknown | 209 | 256 | 347 | 525 | 469 | 555 | 789 | 1198 | 1348 | 1566 | 1425 | 1362 | 197 | 4747 | 1666 | |
Race | American Indian/Alaska Native | 175 | 168 | 184 | 239 | 262 | 282 | 306 | 293 | 286 | 295 | 338 | 353 | 65 | 955 | 592 |
Asian | 745 | 770 | 906 | 998 | 1049 | 1115 | 1145 | 1252 | 1197 | 1371 | 1472 | 1543 | 267 | 3880 | 2415 | |
Black or African American | 2932 | 3083 | 3611 | 3730 | 3847 | 4115 | 4279 | 4530 | 4614 | 5059 | 5116 | 5498 | 1063 | 17025 | 9532 | |
Native Hawaiian or other Pacific Islander | 112 | 95 | 101 | 118 | 124 | 117 | 119 | 109 | 121 | 130 | 157 | 137 | 30 | 383 | 250 | |
White | 21166 | 22205 | 24464 | 25258 | 26185 | 28737 | 29288 | 31090 | 29512 | 32221 | 33237 | 35027 | 6445 | 106673 | 63148 | |
More than one of these | 185 | 248 | 306 | 341 | 376 | 393 | 467 | 479 | 443 | 551 | 602 | 651 | 163 | 1502 | 1005 | |
Unknown | 125 | 179 | 465 | 638 | 877 | 1168 | 1535 | 2138 | 2246 | 2765 | 2813 | 3167 | 510 | 8306 | 3739 | |
Insurance Status | Insured | 24080 | 25613 | 28853 | 30243 | 31598 | 34567 | 35709 | 38348 | 36892 | 40574 | 42246 | 44932 | 8361 | 134310 | 78066 |
Uninsured | 921 | 899 | 959 | 863 | 887 | 1069 | 1046 | 1084 | 1026 | 958 | 1006 | 1250 | 159 | 3194 | 1963 | |
Unknown | 439 | 236 | 225 | 216 | 235 | 291 | 384 | 459 | 501 | 860 | 483 | 194 | 23 | 1220 | 652 | |
Diagnosis | Alpha-2 Antiplasmin deficiency | * | * | * | * | * | * | * | * | * | * | * | * | * | 15 | 7 |
Bernard Soulier syndrome | 19 | 20 | 21 | 31 | 31 | 25 | 29 | 29 | 41 | 38 | 48 | 56 | 11 | 117 | 83 | |
Blood coagulation disorder without specific diagnosis | 184 | 306 | 303 | 357 | 364 | 373 | 387 | 485 | 398 | 498 | 508 | 616 | 126 | 3023 | 885 | |
Ehlers-Danlos syndrome | 45 | 46 | 56 | 49 | 71 | 92 | 100 | 125 | 128 | 143 | 162 | 172 | 25 | 605 | 268 | |
Factor I, hereditary | 57 | 78 | 75 | 87 | 93 | 101 | 114 | 144 | 148 | 199 | 203 | 203 | 41 | 564 | 321 | |
Factor II, hereditary | 17 | 18 | 18 | 24 | 29 | 29 | 34 | 42 | 42 | 42 | 33 | 46 | 8 | 145 | 66 | |
Factor IX, hereditary | 2856 | 2824 | 3197 | 3179 | 3304 | 3536 | 3593 | 3589 | 3516 | 3769 | 3951 | 4156 | 731 | 7985 | 6434 | |
Factor V, hereditary | 93 | 108 | 111 | 106 | 113 | 132 | 108 | 105 | 130 | 147 | 171 | 168 | 23 | 739 | 255 | |
Factor VII, hereditary | 454 | 468 | 499 | 562 | 615 | 710 | 748 | 822 | 851 | 1032 | 1078 | 1207 | 190 | 3561 | 1986 | |
Factor VIII, hereditary | 9470 | 9315 | 10277 | 10501 | 11000 | 11659 | 11759 | 12308 | 11669 | 12521 | 12775 | 12970 | 2722 | 24508 | 20202 | |
Factor X, hereditary | 66 | 60 | 68 | 72 | 81 | 91 | 90 | 105 | 116 | 133 | 159 | 157 | 22 | 384 | 237 | |
Factor XI, hereditary | 276 | 246 | 306 | 344 | 362 | 395 | 423 | 442 | 408 | 507 | 534 | 638 | 78 | 2162 | 1030 | |
Factor XIII, hereditary | 68 | 73 | 88 | 92 | 102 | 118 | 102 | 115 | 120 | 137 | 149 | 161 | 43 | 330 | 201 | |
Factors V & VIII, combined | 10 | 6 | 10 | 7 | * | 13 | 12 | 8 | 10 | 11 | 6 | 8 | * | 26 | 22 | |
Glanzmann thrombasthenia | 115 | 109 | 127 | 130 | 134 | 148 | 143 | 161 | 152 | 156 | 163 | 164 | 33 | 373 | 286 | |
Gray platelet syndrome | * | * | * | * | * | * | * | * | * | * | * | * | * | 21 | 10 | |
Hermansky-Pudlak syndrome | 23 | 32 | 31 | 22 | 45 | 40 | 55 | 51 | 32 | 39 | 51 | 51 | 9 | 153 | 98 | |
PAI-1 deficiency | 104 | 83 | 56 | 64 | 86 | 71 | 84 | 86 | 53 | 73 | 100 | 108 | 22 | 433 | 228 | |
Platelet function disorder, hereditary (nonspecific) | 622 | 638 | 734 | 881 | 910 | 1052 | 1044 | 1172 | 1117 | 1341 | 1391 | 1453 | 244 | 4767 | 2945 | |
Platelet release defect | 17 | 23 | 24 | 18 | 22 | 15 | 19 | 17 | 7 | 16 | 14 | * | * | 60 | 40 | |
Platelet storage pool disease | 710 | 801 | 923 | 901 | 975 | 1000 | 998 | 1003 | 873 | 920 | 924 | 1016 | 175 | 4045 | 2550 | |
Thrombocytopenia, hereditary | 129 | 105 | 110 | 149 | 133 | 200 | 191 | 290 | 211 | 212 | 182 | 243 | 35 | 1225 | 416 | |
Venous Thromboembolism (VTE) | 3525 | 4894 | 6057 | 6548 | 6616 | 7929 | 8553 | 9398 | 9617 | 10097 | 10085 | 10732 | 1895 | 48017 | 19560 | |
Von Willebrand disease type 2, type unknown | 84 | 120 | 141 | 166 | 167 | 162 | 159 | 166 | 155 | 189 | 196 | 211 | 35 | 592 | 372 | |
Von Willebrand disease, type 1 | 5153 | 5062 | 5265 | 5382 | 5775 | 6063 | 6282 | 6898 | 6461 | 7576 | 8204 | 9035 | 1614 | 27480 | 17785 | |
Von Willebrand disease, type 1C | 21 | 26 | 29 | 36 | 29 | 35 | 48 | 54 | 64 | 72 | 77 | 85 | 16 | 161 | 128 | |
Von Willebrand disease, type 2A | 333 | 338 | 363 | 407 | 437 | 472 | 498 | 514 | 530 | 565 | 601 | 623 | 100 | 1364 | 1082 | |
Von Willebrand disease, type 2B | 202 | 192 | 226 | 230 | 239 | 270 | 280 | 299 | 271 | 300 | 296 | 316 | 59 | 758 | 582 | |
Von Willebrand disease, type 2M | 155 | 175 | 213 | 222 | 233 | 253 | 230 | 303 | 224 | 347 | 321 | 395 | 48 | 849 | 649 | |
Von Willebrand disease, type 2N | 39 | 45 | 54 | 54 | 63 | 66 | 67 | 72 | 68 | 81 | 81 | 97 | 25 | 231 | 163 | |
Von Willebrand disease, type 3 | 225 | 228 | 248 | 255 | 254 | 265 | 280 | 269 | 273 | 295 | 303 | 301 | 67 | 531 | 459 | |
Von Willebrand disease, type other | 37 | 26 | 41 | 43 | 51 | 72 | 99 | 126 | 96 | 120 | 103 | 92 | 18 | 402 | 192 | |
Von Willebrand disease, unknown | 326 | 280 | 360 | 396 | 376 | 533 | 597 | 682 | 629 | 805 | 860 | 875 | 119 | 3083 | 1126 | |
History of HCV infection | Yes | 3022 | 2896 | 3184 | 3254 | 3228 | 3245 | 3274 | 3199 | 2957 | 3042 | 3018 | 2944 | 599 | 5931 | 5223 |
No | 14612 | 14468 | 16424 | 17042 | 18719 | 20361 | 21028 | 22388 | 21464 | 24901 | 26686 | 28553 | 5395 | 69016 | 48021 | |
Unknown | 4281 | 4490 | 4372 | 4478 | 4157 | 4392 | 4284 | 4906 | 4381 | 4352 | 3946 | 4147 | 654 | 15760 | 7877 | |
Not Applicable‡ | 3525 | 4894 | 6057 | 6548 | 6616 | 7929 | 8553 | 9398 | 9617 | 10097 | 10085 | 10732 | 1895 | 48017 | 19560 | |
History of HIV infection | Yes | 925 | 875 | 943 | 920 | 915 | 908 | 915 | 913 | 856 | 864 | 872 | 850 | 173 | 1691 | 1466 |
No | 16382 | 16173 | 18407 | 19139 | 20827 | 22491 | 23252 | 24500 | 23387 | 26946 | 28677 | 30510 | 5802 | 72889 | 51462 | |
Unknown | 4608 | 4806 | 4630 | 4715 | 4362 | 4599 | 4419 | 5080 | 4559 | 4485 | 4101 | 4284 | 673 | 16127 | 8193 | |
Not Applicable‡ | 3525 | 4894 | 6057 | 6548 | 6616 | 7929 | 8553 | 9398 | 9617 | 10097 | 10085 | 10732 | 1895 | 48017 | 19560 |
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 37 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.
****This column contains a partial year of data through March 2024.