HTC Population Profile Patient Characteristics

Table 1. HTC Population Profile Patient Characteristics by Calendar Year, Data Reported From 1/1/2012 through 3/31/2021

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 Unique
Patients1
Multi-year
Patients2
# HTCs contributing data 125 130** 133 134 136*** 138 140 138 141 124 146 144
# of patients 25450 26753 30027 31208 32689 34914 36857 39728 37541 7566 106352 61286
Age (years) <2 802 854 1030 1107 1193 1194 1143 1223 1222 251 4278 748
2-10 5712 5750 6163 6348 6449 6584 6757 6988 6252 1282 16000 9727
11-19 7053 7367 8098 8376 9036 9387 9772 10492 9402 2005 27768 16916
20-44 7015 7226 8300 8652 9039 9683 10525 11279 11262 2341 31058 19338
45-64 3566 3956 4560 4702 4781 5352 5613 6168 5859 1050 17319 9205
65+ 1302 1600 1876 2023 2191 2714 3047 3578 3544 637 9929 5352
Sex Male 16934 17376 19270 19983 20692 21507 22580 23779 22323 4706 55682 35777
Female 8516 9377 10757 11225 11997 13407 14277 15949 15218 2860 50670 25509
Ethnicity Hispanic, Latino/a, or Spanish origin 3771 3810 4401 4636 5177 5492 5705 6191 5730 1320 14944 9224
Not Hispanic, Latino/a, or Spanish origin 21470 22687 25279 26048 27042 28879 30370 32348 30487 6003 88236 51094
Unknown 209 256 347 524 470 543 782 1189 1324 243 3172 968
Race American Indian/Alaska Native 175 168 184 238 262 271 299 292 279 55 718 446
Asian 745 770 906 994 1046 1095 1138 1249 1186 255 2841 1831
Black or African American 2933 3085 3615 3719 3847 4018 4245 4504 4506 989 12671 7099
Native Hawaiian or other Pacific Islander 112 95 101 118 124 116 118 108 120 13 299 194
White 21175 22208 24451 25161 26162 27896 29076 30973 28833 5717 83721 48993
More than one of these 185 248 306 342 377 388 462 479 435 120 1035 695
Unknown 125 179 464 636 871 1130 1519 2123 2182 417 5067 2028
Insurance Status Insured 24090 25618 28846 30129 31567 33600 35436 38191 36033 7235 102443 58946
Uninsured 921 900 958 862 887 1025 1040 1081 1017 118 2639 1605
Unknown 439 235 223 217 235 289 381 456 491 213 1270 735
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * * * 13 *
Bernard Soulier syndrome 19 20 21 31 31 25 28 29 38 8 79 55
Blood coagulation disorder without specific diagnosis 184 306 300 353 363 361 382 480 380 60 2099 540
Ehlers-Danlos syndrome 45 46 56 49 71 89 97 124 121 18 395 167
Factor I, hereditary 57 78 75 87 93 99 113 144 147 34 368 204
Factor II, hereditary 18 19 18 24 29 26 33 41 41 11 114 48
Factor IX, hereditary 2857 2826 3196 3174 3302 3426 3578 3575 3440 628 6864 5431
Factor V, hereditary 93 108 110 106 113 127 107 104 126 28 539 180
Factor VII, hereditary 454 468 498 557 613 683 741 822 833 166 2515 1338
Factor VIII, hereditary 9474 9316 10273 10472 10990 11374 11666 12269 11428 2682 21400 17456
Factor X, hereditary 66 60 68 72 81 87 89 105 113 19 270 154
Factor XI, hereditary 276 246 306 339 362 379 417 441 398 81 1520 707
Factor XIII, hereditary 68 73 88 93 102 115 100 116 120 31 246 157
Factors V & VIII, combined 10 6 10 7 * 13 12 8 9 * 22 20
Glanzmann thrombasthenia 115 109 127 130 134 144 142 161 147 40 302 236
Gray platelet syndrome * * * * * * 9 * * * 18 8
Hermansky-Pudlak syndrome 23 32 31 22 45 39 55 51 31 * 126 69
PAI-1 deficiency 104 83 53 62 85 68 83 86 53 10 337 160
Platelet function disorder, hereditary (nonspecific) 622 638 737 873 911 1019 1029 1157 1081 236 3503 2041
Platelet release defect 17 23 24 18 22 15 19 17 7 * 49 34
Platelet storage pool disease 710 801 921 897 974 988 989 1001 869 226 3444 2041
Thrombocytopenia, hereditary 129 105 109 148 131 196 190 288 200 32 880 321
Venous Thromboembolism (VTE) 3530 4895 6055 6526 6613 7721 8508 9348 9457 1589 34706 13664
Von Willebrand disease, type 1 5156 5064 5266 5354 5767 5847 6219 6874 6228 1201 20570 12686
Von Willebrand disease, type 1C 18 24 26 36 28 33 47 53 63 11 114 89
Von Willebrand disease, type 2A 333 338 363 405 436 463 496 512 517 97 1104 838
Von Willebrand disease, type 2B 202 192 225 226 239 263 277 296 263 55 638 475
Von Willebrand disease, type 2M 155 175 212 220 233 246 226 298 219 38 586 444
Von Willebrand disease, type 2N 39 45 54 54 63 62 67 72 67 13 183 122
Von Willebrand disease, type 2, type unknown 84 119 141 167 167 154 157 163 151 30 465 284
Von Willebrand disease, type 3 225 230 251 259 253 257 276 268 268 73 469 406
Von Willebrand disease, type other 37 26 42 44 53 71 99 126 96 21 319 149
Von Willebrand disease, unknown 325 279 365 397 375 517 602 688 620 118 2095 756
History of HCV infection Yes 3020 2898 3186 3247 3226 3162 3248 3190 2924 652 5664 4931
No 14617 14466 16410 16988 18692 19807 20842 22297 20813 4601 51804 35584
Unknown 4283 4494 4376 4447 4158 4224 4259 4893 4347 724 14178 7107
Not Applicable 3530 4895 6055 6526 6613 7721 8508 9348 9457 1589 34706 13664
History of HIV infection Yes 925 876 943 918 914 880 909 911 847 207 1606 1397
No 16385 16172 18395 19078 20798 21887 23050 24402 22718 5025 55493 38806
Unknown 4610 4810 4634 4686 4364 4426 4390 5067 4519 745 14547 7419
Not Applicable‡ 3530 4895 6055 6526 6613 7721 8508 9348 9457 1589 34706 13664

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 51 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 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 suppressed 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.