HTC Population Profile Patient Characteristics

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.

HTC Population Profile Patient Characteristics by Calendar Year
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.

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Content Source:
National Center on Birth Defects and Developmental Disabilities