HTC Population Profile Patient Characteristics

Table 1. HTC Population Profile Patient Characteristics by Calendar Year, Data Reported From 1/1/2012 Through 9/29/2017

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 Unique
patients1
Multi-year
Patients2
# HTCs contributing data 125 130** 132 134 136*** 129 137 135
# of patients 25443 26733 29945 30961 32151 19899 70104 39321
Age (years) <2 806 861 1044 1105 1175 543 2544 449
2-10 5711 5752 6152 6308 6374 3895 12092 7329
11-19 7056 7367 8079 8314 8897 5502 18870 11383
20-44 7007 7210 8273 8604 8924 5513 20143 11886
45-64 3561 3946 4538 4654 4669 3026 11180 5645
65+ 1302 1597 1859 1976 2112 1420 5275 2629
Sex† Male 16930 17375 19228 19841 20397 12661 39460 25088
Female 8513 9358 10717 11120 11754 7238 30644 14233
Ethnicity Hispanic, Latino/a, or Spanish origin 3725 3767 4339 4528 5041 3038 9722 5884
Not Hispanic, Latino/a, or Spanish origin 21512 22711 25229 25823 26582 16616 59333 33139
Unknown 206 255 377 610 528 245 1049 298
Race American Indian/Alaska Native 179 170 189 235 261 162 481 288
Asian 713 747 885 972 1014 624 1903 1181
Black or African American 2916 3068 3568 3668 3774 2425 8125 4618
Native Hawaiian or other Pacific Islander 115 95 106 127 130 53 241 152
White 21334 22300 24470 24950 25682 15841 57013 32064
More than one of these 83 144 207 300 328 239 606 405
Unknown 103 209 520 709 962 555 1735 613
Insurance Status Insured 24086 25601 28769 29895 31051 19298 67663 37965
Uninsured 920 899 956 857 877 488 1892 1108
Unknown 437 233 220 209 223 113 549 248
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * 6 *
Bernard Soulier syndrome 19 21 23 33 32 10 49 36
Blood coagulation disorder without specific diagnosis 185 311 294 354 349 144 1170 265
Ehlers-Danlos syndrome 45 43 56 49 69 50 195 64
Factor I, hereditary 57 76 73 86 92 54 208 112
Factor II, hereditary 18 18 19 23 28 12 65 26
Factor IX, hereditary 2846 2813 3178 3148 3277 1961 5379 4142
Factor V, hereditary 98 109 120 110 109 81 384 112
Factor VII, hereditary 459 472 496 553 603 367 1485 731
Factor VIII, hereditary 9469 9293 10260 10415 10865 6965 17100 13427
Factor X, hereditary 68 59 68 70 80 49 168 90
Factor XI, hereditary 276 250 312 338 354 192 949 403
Factor XIII, hereditary 71 85 99 103 107 71 178 114
Factors V & VIII, combined * * * * * * 17 *
Glanzmann thrombasthenia 114 108 124 126 126 94 220 169
Gray platelet syndrome * * * * * * 11 *
Hermansky-Pudlak syndrome 21 31 32 20 35 11 78 30
PAI-1 deficiency 106 83 52 60 87 42 252 89
Platelet function disorder, hereditary (nonspecific) 630 635 729 849 893 583 2195 1120
Platelet release defect 17 26 26 19 21 10 47 30
Platelet storage pool disease 698 794 912 897 976 684 2534 1352
Thrombocytopenia, hereditary 133 114 110 148 123 97 482 136
Venous Thromboembolism (VTE) 3526 4884 6022 6415 6403 4027 19140 6689
Von Willebrand disease, type 1 5176 5081 5269 5340 5673 3242 13964 7891
Von Willebrand disease, type 1C 10 15 23 35 27 18 50 38
Von Willebrand disease, type 2A 328 335 344 385 426 251 785 550
Von Willebrand disease, type 2B 197 192 213 220 234 137 449 314
Von Willebrand disease, type 2M 150 171 205 210 223 154 384 296
Von Willebrand disease, type 2N 34 45 53 53 61 37 125 80
Von Willebrand disease, type 2, type unknown 83 114 160 191 190 89 383 239
Von Willebrand disease, type 3 232 232 249 260 252 165 399 317
Von Willebrand disease, type other 43 30 41 45 53 30 143 54
Von Willebrand disease, unknown 320 282 367 391 371 261 1110 384
History of HCV infection Yes 3035 2884 3170 3208 3182 1990 4995 4161
No 14620 14113 15701 16644 17873 11141 34865 22800
Unknown 4262 4852 5052 4694 4693 2741 11104 5671
Not Applicable‡ 3526 4884 6022 6415 6403 4027 19140 6689
History of HIV infection Yes 942 881 964 956 938 570 1445 1228
No 16410 15742 17557 18675 19890 12397 37953 25375
Unknown 4565 5226 5402 4915 4920 2905 11566 6029
Not Applicable‡ 3526 4884 6022 6415 6403 4027 19140 6689

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 30 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.