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 9/29/2019

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 Unique
Patients1		 Multi-year
Patients2
# of HTCs contributing data 125 130** 133 134 136*** 137 140 135 143 140
# of patients 25445 26745 30014 31201 32649 34790 36345 25005 90935 51763
Age (years) <2 804 855 1031 1107 1192 1187 1117 648 3426 592
2-10 5710 5747 6157 6346 6444 6561 6647 4586 14427 8703
11-19 7051 7366 8096 8371 9026 9352 9608 6574 24022 14589
20-44 7013 7221 8297 8653 9028 9651 10408 6972 26276 16016
45-64 3565 3955 4558 4702 4769 5333 5556 3941 14835 7677
65+ 1302 1601 1875 2022 2190 2706 3009 2284 7949 4186
Sex† Male 16931 17372 19265 19981 20673 21437 22274 15408 48859 31280
Female 8514 9373 10749 11220 11976 13353 14071 9597 42076 20483
Ethnicity Hispanic, Latino/a, or Spanish origin 3767 3809 4399 4635 5163 5478 5595 3778 12695 7739
Not Hispanic, Latino/a, or Spanish origin 21469 22680 25269 26041 27016 28770 29987 20529 76161 43437
Unknown 209 256 346 525 470 542 763 698 2079 587
Race American Indian/Alaska Native 176 168 184 239 264 272 294 164 614 377
Asian 745 769 905 993 1045 1094 1121 755 2430 1540
Black or African American 2933 3084 3611 3719 3845 4015 4221 2828 10566 6006
Native Hawaiian or other Pacific Islander 112 95 101 118 124 115 116 58 268 166
White 21173 22205 24446 25157 26128 27783 28658 19616 72661 41782
More than one of these 181 244 303 339 371 381 448 331 875 567
Unknown 125 180 464 636 872 1130 1487 1253 3521 1325
Insurance Status Insured 24086 25613 28834 30124 31531 33479 34945 24088 87710 49965
Uninsured 921 899 958 861 885 1023 1025 738 2390 1419
Unknown 438 233 222 216 233 288 375 179 835 379
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * 8 *
Bernard Soulier syndrome 19 20 21 31 31 25 28 16 64 45
Blood coagulation disorder without specific diagnosis 184 306 301 352 361 358 366 218 1687 387
Ehlers-Danlos syndrome 45 45 56 49 71 88 94 67 302 104
Factor I, hereditary 57 78 75 87 93 99 111 78 286 165
Factor II, hereditary 18 19 18 24 28 25 31 20 85 34
Factor IX, hereditary 2856 2826 3194 3174 3299 3416 3546 2347 6285 4905
Factor V, hereditary 93 108 110 106 113 127 104 66 475 149
Factor VII, hereditary 454 468 496 557 612 681 730 452 2040 1043
Factor VIII, hereditary 9474 9312 10273 10474 10984 11341 11504 8270 19718 15806
Factor X, hereditary 66 60 68 72 80 87 88 64 227 127
Factor XI, hereditary 276 247 308 340 362 376 412 237 1268 572
Factor XIII, hereditary 68 73 88 93 102 115 99 88 216 134
Factors V & VIII, combined 10 6 10 7 * 13 12 6 22 17
Glanzmann thrombasthenia 115 109 126 129 134 142 141 84 265 204
Gray platelet syndrome * * * * * * * * 18 *
Hermansky-Pudlak syndrome 23 32 31 23 44 38 53 29 118 67
PAI-1 deficiency 104 83 52 61 84 67 83 66 304 131
Platelet function disorder, hereditary (nonspecific) 622 639 738 871 909 1011 1006 652 2919 1633
Platelet release defect 17 23 24 18 22 15 19 12 48 32
Platelet storage pool disease 708 801 919 895 973 984 983 658 3056 1758
Thrombocytopenia, hereditary 129 105 109 148 130 191 181 193 736 247
Venous Thromboembolism (VTE) 3530 4895 6054 6523 6607 7698 8426 5744 28030 10649
Von Willebrand disease, type 1 5155 5061 5263 5352 5760 5834 6117 4107 17678 10588
Von Willebrand disease, type 1C 18 24 26 36 28 33 45 34 84 62
Von Willebrand disease, type 2A 332 338 363 406 435 460 488 318 972 729
Von Willebrand disease, type 2B 202 193 225 226 239 263 272 192 577 419
Von Willebrand disease, type 2M 155 175 212 220 233 244 222 214 499 373
Von Willebrand disease, type 2N 38 44 53 54 63 61 66 49 162 106
Von Willebrand disease, type 2, type unknown 85 118 141 167 168 153 156 103 409 240
Von Willebrand disease, type 3 225 230 250 260 251 253 266 183 444 365
Von Willebrand disease, type other 37 26 40 43 52 70 96 75 245 105
Von Willebrand disease, unknown 325 278 364 397 371 516 588 358 1688 555
History of HCV infection Yes 3021 2891 3184 3248 3220 3154 3204 2173 5471 4686
No 14630 14470 16379 16983 18657 19728 20503 14025 44942 30427
Unknown 4264 4489 4397 4447 4165 4210 4212 3063 12492 6001
Not Applicable‡ 3530 4895 6054 6523 6607 7698 8426 5744 28030 10649
History of HIV infection Yes 926 874 945 925 914 881 902 641 1549 1341
No 16417 16194 18384 19096 20786 21817 22693 15403 48504 33468
Unknown 4572 4782 4631 4657 4342 4394 4324 3217 12852 6305
Not Applicable‡ 3530 4895 6054 6523 6607 7698 8426 5744 28030 10649

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 52 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.

* 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.

‡ HCV and HIV status are not recorded for VTE patients.

** 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