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 9/29/2021

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*** 138 140 138 141 138 146 145
# of patients 25449 26752 30026 31208 32691 34921 36876 39781 38033 26102 110632 63941
Age (years) <2 802 854 1030 1107 1193 1195 1144 1223 1236 712 4416 744
2-10 5712 5749 6163 6348 6449 6584 6761 6995 6352 4332 16321 9946
11-19 7052 7367 8097 8375 9037 9391 9778 10501 9582 6632 28780 17561
20-44 7015 7226 8300 8653 9039 9683 10532 11297 11380 7999 32469 20343
45-64 3566 3956 4560 4702 4782 5352 5613 6181 5908 3990 18109 9645
65+ 1302 1600 1876 2023 2191 2716 3048 3584 3575 2437 10537 5702
Sex† Male 16933 17375 19269 19983 20694 21511 22589 23801 22593 15625 57464 36947
Female 8516 9377 10757 11225 11997 13410 14287 15980 15440 10477 53168 26994
Ethnicity Hispanic, Latino/a, or Spanish origin 3771 3810 4401 4636 5178 5493 5711 6199 5806 3957 15445 9590
Not Hispanic, Latino/a, or Spanish origin 21469 22686 25278 26048 27043 28884 30382 32392 30894 21182 91687 53245
Unknown 209 256 347 524 470 544 783 1190 1333 963 3500 1106
Race American Indian/Alaska Native 175 168 184 238 262 271 299 292 282 182 751 466
Asian 745 770 906 994 1047 1095 1138 1248 1188 818 2960 1898
Black or African American 2933 3085 3615 3719 3847 4019 4249 4515 4571 3137 13230 7442
Native Hawaiian or other Pacific Islander 112 95 101 118 124 116 118 108 120 71 313 213
White 21174 22207 24450 25162 26164 27902 29089 31014 29234 19946 86694 50915
More than one of these 185 248 306 341 376 387 462 478 440 367 1093 725
Unknown 125 179 464 636 871 1131 1521 2126 2198 1581 5591 2282
Insurance Status Insured 24089 25617 28845 30129 31569 33606 35454 38243 36519 24901 106472 61409
Uninsured 921 900 958 862 887 1026 1040 1082 1019 527 2621 1578
Unknown 439 235 223 217 235 289 382 456 495 674 1539 954
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 6 6 * 13 *
Bernard Soulier syndrome 19 20 21 31 31 25 29 29 41 23 83 59
Blood coagulation disorder without sphcific diagnosis 184 306 300 352 363 360 381 482 386 215 2186 572
Ehlers-Danlos syndrome 45 46 56 49 71 90 98 125 125 89 429 183
Factor I, hereditary 57 78 75 87 93 99 113 144 148 130 404 235
Factor II, hereditary 18 19 18 24 29 27 34 42 42 33 123 54
Factor IX, hereditary 2857 2825 3196 3174 3303 3426 3578 3578 3480 2370 7031 5584
Factor V, hereditary 93 108 110 106 113 127 107 104 130 98 571 192
Factor VII, hereditary 454 468 498 557 613 684 741 822 846 608 2654 1438
Factor VIII, hereditary 9473 9316 10272 10472 10991 11375 11668 12280 11552 8414 21809 17863
Factor X, hereditary 66 60 68 72 81 87 89 105 113 78 284 163
Factor XI, hereditary 276 246 306 339 362 379 417 441 401 271 1579 739
Factor XIII, hereditary 68 73 88 92 102 115 100 116 120 92 255 163
Factors V & VIII, combined 10 6 10 7 * 13 12 8 9 6 22 20
Glanzmann thrombasthenia 115 109 127 130 134 144 142 161 147 101 311 239
Gray platelet syndrome * * * * * * 9 * * * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 45 39 55 51 32 21 131 72
PAI-1 deficiency 104 83 53 62 85 68 83 86 53 43 345 167
Platelet function disorder, hereditary (nonsphcific) 622 638 737 873 911 1019 1029 1161 1093 813 3693 2153
Platelet release defect 17 23 24 18 22 15 19 17 7 13 55 35
Platelet storage pool disease 710 801 921 897 974 988 990 1001 871 566 3525 2110
Thrombocytopenia, hereditary 129 105 109 148 131 196 190 289 208 139 920 327
Venous Thromboembolism (VTE) 3530 4895 6055 6526 6613 7722 8513 9370 9557 5755 36535 14460
Von Willebrand disease, type 1 5156 5064 5267 5356 5767 5851 6226 6878 6376 4518 21370 13348
Von Willebrand disease, type 1C 18 24 26 36 28 33 47 53 63 40 120 96
Von Willebrand disease, type 2A 333 338 363 405 436 463 496 513 520 356 1140 885
Von Willebrand disease, type 2B 202 192 225 226 239 263 277 296 266 176 646 488
Von Willebrand disease, type 2M 155 175 212 220 233 246 227 299 222 206 620 467
Von Willebrand disease, type 2N 39 45 54 54 63 62 67 72 68 52 193 129
Von Willebrand disease, type 2, type unknown 84 119 141 167 167 154 157 164 153 110 482 301
Von Willebrand disease, type 3 225 230 251 259 253 257 276 269 272 205 472 411
Von Willebrand disease, type other 37 26 42 44 53 71 100 126 97 75 343 155
Von Willebrand disease, unknown 325 279 364 397 375 516 602 688 625 480 2269 820
History of HCV infection Yes 3021 2898 3186 3247 3226 3162 3248 3193 2940 2056 5715 4984
No 14616 14467 16410 16988 18694 19813 20854 22324 21181 15592 54102 37274
Unknown 4282 4492 4375 4447 4158 4224 4261 4894 4355 2699 14280 7223
Not Applicable‡ 3530 4895 6055 6526 6613 7722 8513 9370 9557 5755 36535 14460
History of HIV infection Yes 925 876 943 918 914 880 909 913 852 606 1608 1400
No 16385 16173 18395 19078 20800 21893 23062 24430 23097 16955 57858 40558
Unknown 4609 4808 4633 4686 4364 4426 4392 5068 4527 2786 14631 7523
Not Applicable‡ 3530 4895 6055 6526 6613 7722 8513 9370 9557 5755 36535 14460

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.

† On August 10, 2020, “intersex” was added as a response option. 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.

Page last reviewed: August 1, 2022
Content source:  National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention