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 9/29/2018

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 Unique
patients1		 Multi-year
Patients2
# of HTCs contributing data 125 130** 132 134 136*** 137 130 141 135
# of patients 25446 26731 29994 31077 32463 34346 21861 80173 45435
Age (years) <2 806 857 1043 1111 1195 1177 620 3042 545
2-10 5710 5749 6154 6325 6422 6485 4202 13268 8080
11-19 7057 7365 8086 8334 8982 9254 5859 21242 12974
20-44 7009 7210 8286 8625 8976 9522 6139 23075 13882
45-64 3561 3950 4552 4680 4729 5251 3247 12965 6585
65+ 1303 1600 1873 2002 2159 2657 1794 6581 3369
Sex† Male 16929 17366 19245 19890 20560 21164 13728 43993 28211
Female 8517 9365 10749 11187 11903 13182 8133 36180 17224
Ethnicity Hispanic, Latino/a, or Spanish origin 3737 3774 4352 4549 5093 5373 3356 11113 6821
Not Hispanic, Latino/a, or Spanish origin 21503 22702 25265 25922 26837 28374 18147 67625 38160
Unknown 206 255 377 606 533 599 358 1435 454
Race American Indian/Alaska Native 178 169 189 236 262 268 144 530 328
Asian 715 748 885 977 1025 1064 674 2146 1362
Black or African American 2917 3068 3587 3690 3819 3971 2630 9321 5301
Native Hawaiian or other Pacific Islander 115 95 105 127 130 121 55 259 163
White 21331 22295 24510 25058 25941 27349 17335 64706 36854
More than one of these 87 148 208 302 330 370 273 739 480
Unknown 103 208 510 687 956 1203 750 2472 947
Insurance Status Insured 24092 25602 28818 30010 31359 33062 21148 77378 43844
Uninsured 917 897 955 858 880 1007 590 2145 1290
Unknown 437 232 221 209 224 277 123 650 301
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * 7 *
Bernard Soulier syndrome 19 21 23 33 32 23 17 56 39
Blood coagulation disorder without specific diagnosis 185 308 301 356 356 346 118 1380 323
Ehlers-Danlos syndrome 45 43 56 50 69 91 36 234 79
Factor I, hereditary 57 76 73 85 92 101 57 239 139
Factor II, hereditary 18 18 19 23 28 25 19 77 29
Factor IX, hereditary 2847 2813 3178 3151 3287 3377 2207 5851 4538
Factor V, hereditary 98 109 120 109 112 133 60 438 133
Factor VII, hereditary 459 472 498 555 608 670 406 1760 881
Factor VIII, hereditary 9469 9292 10260 10430 10931 11209 7396 18434 14612
Factor X, hereditary 68 59 68 70 80 87 52 194 105
Factor XI, hereditary 277 251 313 341 363 372 226 1121 485
Factor XIII, hereditary 71 85 99 103 108 118 58 201 126
Factors V & VIII, combined 8 7 9 8 6 13 9 22 18
Glanzmann thrombasthenia 115 109 125 126 129 139 80 243 186
Gray platelet syndrome * * * * * * * 17 *
Hermansky-Pudlak syndrome 21 31 32 20 35 27 21 94 44
PAI-1 deficiency 106 83 53 61 87 68 55 275 106
Platelet function disorder, hereditary (nonspecific) 630 634 727 848 896 993 583 2557 1358
Platelet release defect 17 26 28 21 23 15 11 46 31
Platelet storage pool disease 699 796 914 898 978 977 658 2768 1580
Thrombocytopenia, hereditary 129 111 112 152 128 182 96 572 171
Venous Thromboembolism (VTE) 3527 4887 6047 6479 6535 7571 4841 23480 8584
Von Willebrand disease, type 1 5177 5085 5281 5359 5724 5773 3611 15697 9261
Von Willebrand disease, type 1C 10 15 23 35 27 32 27 68 52
Von Willebrand disease, type 2A 329 338 344 386 426 448 264 861 629
Von Willebrand disease, type 2B 197 193 214 220 235 255 170 507 370
Von Willebrand disease, type 2M 150 171 206 210 224 237 141 436 335
Von Willebrand disease, type 2N 37 45 53 53 63 61 46 143 94
Von Willebrand disease, type 2, type unknown 83 112 159 191 192 164 98 407 247
Von Willebrand disease, type 3 232 231 249 259 252 252 175 421 338
Von Willebrand disease, type other 41 28 40 46 54 68 40 181 73
Von Willebrand disease, unknown 319 278 363 392 377 513 277 1386 461
History of HCV infection Yes 3035 2886 3173 3211 3195 3098 2011 5215 4416
No 14627 14114 15726 16693 18037 19089 12226 39520 26437
Unknown 4257 4844 5048 4694 4696 4588 2783 11958 5998
Not Applicable‡ 3527 4887 6047 6479 6535 7571 4841 23480 8584
History of HIV infection Yes 942 882 964 958 941 893 566 1489 1277
No 16417 15743 17585 18725 20064 21075 13554 42821 29247
Unknown 4560 5219 5398 4915 4923 4807 2900 12383 6327
Not Applicable‡ 3527 4887 6047 6479 6535 7571 4841 23480 8584

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 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.

‡ 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