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 3/31/2020

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 2020 Unique
Patients1		 Multi-year
Patients2
# of HTCs contributing data 125 130** 133 134 136*** 137 140 138 131 143 142
# of patients 25450 26752 30026 31209 32678 34891 36784 39270 7159 97002 55263
Age (years) <2 802 854 1030 1107 1192 1193 1139 1199 196 3752 634
2-10 5712 5750 6163 6348 6449 6581 6742 6902 1370 15112 9098
11-19 7053 7367 8097 8375 9031 9379 9753 10362 1913 25667 15531
20-44 7015 7226 8300 8653 9037 9677 10502 11147 2024 28027 17176
45-64 3566 3955 4560 4703 4778 5347 5605 6113 1039 15774 8198
65+ 1302 1600 1876 2023 2191 2714 3043 3547 617 8670 4626
Sex† Male 16934 17376 19270 19983 20688 21496 22541 23514 4489 51514 32932
Female 8516 9376 10756 11226 11990 13395 14243 15756 2670 45488 22331
Ethnicity Hispanic, Latino/a, or Spanish origin 3769 3810 4400 4635 5172 5488 5686 6069 1046 13601 8280
Not Hispanic, Latino/a, or Spanish origin 21472 22686 25279 26050 27037 28860 30321 32020 5948 80958 46255
Unknown 209 256 347 524 469 543 777 1181 165 2443 728
Race American Indian/Alaska Native 175 168 184 238 262 271 299 287 61 660 411
Asian 745 770 906 994 1046 1095 1136 1235 231 2615 1672
Black or African American 2933 3085 3615 3720 3846 4017 4240 4468 926 11331 6371
Native Hawaiian or other Pacific Islander 112 95 101 118 124 116 118 108 18 282 184
White 21175 22207 24450 25161 26154 27877 29020 30612 5513 77096 44416
More than one of these 185 248 306 342 376 386 459 476 100 938 619
Unknown 125 179 464 636 870 1129 1512 2084 310 4080 1590
Insurance Status Insured 24090 25617 28845 30131 31557 33577 35373 37767 6697 93273 53132
Uninsured 921 900 958 861 887 1025 1031 1052 202 2486 1464
Unknown 439 235 223 217 234 289 380 451 260 1243 667
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * * 9 *
Bernard Soulier syndrome 19 20 21 31 31 25 28 29 9 75 49
Blood coagulation disorder without specific diagnosis 184 306 300 353 362 360 380 469 63 1900 446
Ehlers-Danlos syndrome 45 46 56 49 71 89 97 118 25 344 123
Factor I, hereditary 57 78 75 87 93 99 113 139 25 311 184
Factor II, hereditary 18 19 18 24 29 26 33 41 7 99 42
Factor IX, hereditary 2857 2826 3196 3174 3302 3426 3574 3539 670 6534 5084
Factor V, hereditary 93 108 110 106 113 127 107 103 20 491 156
Factor VII, hereditary 454 468 497 557 612 683 741 802 162 2231 1147
Factor VIII, hereditary 9475 9317 10275 10472 10989 11367 11648 12117 2573 20425 16430
Factor X, hereditary 66 60 68 72 81 87 89 105 18 239 140
Factor XI, hereditary 276 246 306 339 362 378 416 434 72 1371 625
Factor XIII, hereditary 68 73 88 93 102 115 99 115 35 224 144
Factors V & VIII, combined 10 6 10 7 * 13 12 8 * 22 17
Glanzmann thrombasthenia 115 109 127 130 134 144 142 160 35 283 218
Gray platelet syndrome * * * * * * 9 * * 19 8
Hermansky-Pudlak syndrome 23 32 31 22 44 39 54 49 * 127 73
PAI-1 deficiency 104 83 53 62 85 68 83 86 15 318 145
Platelet function disorder, hereditary (nonspecific) 622 638 738 873 910 1018 1023 1135 187 3144 1791
Platelet release defect 17 23 24 18 22 15 19 17 * 46 32
Platelet storage pool disease 710 801 921 897 974 987 987 995 158 3197 1850
Thrombocytopenia, hereditary 129 105 109 148 130 195 188 284 31 797 272
Venous Thromboembolism (VTE) 3530 4895 6055 6526 6613 7718 8495 9278 1553 30424 11762
Von Willebrand disease, type 1 5156 5064 5265 5354 5764 5844 6202 6795 1105 18921 11326
Von Willebrand disease, type 1C 18 24 26 36 28 33 47 51 7 94 71
Von Willebrand disease, type 2A 332 338 363 406 435 461 496 507 88 1020 773
Von Willebrand disease, type 2B 202 192 225 226 239 263 276 291 51 600 443
Von Willebrand disease, type 2M 155 175 212 220 233 245 225 294 46 541 399
Von Willebrand disease, type 2N 38 44 53 54 63 61 66 71 9 166 111
Von Willebrand disease, type 2, type unknown 85 119 141 167 168 155 157 161 29 436 262
Von Willebrand disease, type 3 225 230 251 260 252 256 276 268 66 454 387
Von Willebrand disease, type other 37 26 41 43 53 70 99 122 14 280 120
Von Willebrand disease, unknown 325 278 365 397 374 517 599 677 79 1860 629
History of HCV infection Yes 3020 2898 3186 3248 3225 3162 3242 3150 646 5550 4787
No 14616 14465 16409 16990 18687 19790 20798 21986 4151 47709 32298
Unknown 4284 4494 4376 4445 4153 4221 4249 4856 809 13319 6416
Not Applicable‡ 3530 4895 6055 6526 6613 7718 8495 9278 1553 30424 11762
History of HIV infection Yes 925 876 943 919 913 880 909 899 207 1566 1359
No 16383 16171 18393 19078 20792 21871 22998 24058 4573 51320 35411
Unknown 4612 4810 4635 4686 4360 4422 4382 5035 826 13692 6731
Not Applicable‡ 3530 4895 6055 6526 6613 7718 8495 9278 1553 30424 11762

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 62 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.

**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.

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

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