HTC Population Profile Patient Characteristics

Table 1. HTC Population Profile Patient Characteristics by Calendar Year, data reported from 1/1/2012 through 03/31/2019

HTC Population Profile Patient Characteristics by Calendar Year
2012 2013 2014 2015 2016 2017 2018 2019 Unique
patients1
Multi-year
Patients2
# HTCs contributing data 125 130 133 134 136 137 138 124 142 139
# of patients 25446 26737 30006 31111 32556 34615 35773 7765 86120 49087
Age (years) <2 806 857 1043 1112 1198 1185 1103 201 3242 596
2-10 5710 5749 6156 6336 6434 6542 6563 1518 13986 8492
11-19 7056 7366 8088 8344 9017 9330 9485 2007 22751 13946
20-44 7009 7213 8288 8632 9006 9600 10283 2184 24900 15095
45-64 3562 3952 4554 4685 4738 5287 5423 1230 13976 7190
65+ 1303 1600 1877 2002 2163 2671 2916 625 7265 3768
Sex Male 16928 17371 19255 19914 20622 21338 21944 5005 46692 30003
Female 8518 9366 10751 11197 11934 13277 13829 2760 39428 19084
Ethnicity Hispanic, Latino/a, or Spanish origin 3737 3776 4355 4560 5107 5421 5482 1285 11962 7387
Not Hispanic, Latino/a, or Spanish origin 21503 22705 25274 25945 26914 28593 29500 6181 72271 41132
Unknown 206 256 377 606 535 601 791 299 1887 568
Race American Indian/Alaska Native 179 169 188 236 261 269 291 43 581 355
Asian 720 753 888 981 1027 1076 1102 243 2327 1467
Black or African American 2917 3070 3589 3690 3824 3993 4148 977 9997 5722
Native Hawaiian or other Pacific Islander 114 95 105 127 130 122 118 17 274 172
White 21325 22293 24515 25083 26017 27554 28125 5916 68943 39586
More than one of these 88 148 209 304 332 371 447 126 838 540
Unknown 103 209 512 690 965 1230 1542 443 3160 1245
Insurance Status Insured 24092 25607 28828 30039 31443 33313 34391 7459 83041 47374
Uninsured 917 897 955 858 881 1018 1017 261 2259 1353
Unknown 437 233 223 214 232 284 365 45 820 360
Diagnosis Alpha-2 Antiplasmin deficiency * * * * * * * * 7 *
Bernard Soulier syndrome 19 21 23 33 32 24 27 * 61 41
Blood coagulation disorder without specific diagnosis 185 309 301 358 356 349 352 27 1558 373
Ehlers-Danlos syndrome 45 43 56 50 69 91 94 15 274 92
Factor I, hereditary 57 76 73 85 92 101 113 21 269 151
Factor II, hereditary 18 18 19 23 28 25 30 * 80 31
Factor IX, hereditary 2847 2813 3180 3155 3292 3399 3510 766 6095 4756
Factor V, hereditary 98 109 120 109 116 135 104 17 458 147
Factor VII, hereditary 459 472 497 555 610 676 726 139 1930 979
Factor VIII, hereditary 9469 9298 10264 10445 10966 11302 11384 2917 19192 15317
Factor X, hereditary 68 59 68 70 80 87 87 19 213 115
Factor XI, hereditary 277 251 313 341 363 377 408 67 1212 537
Factor XIII, hereditary 71 85 99 103 108 121 103 38 211 138
Factors V & VIII, combined 8 7 9 8 6 13 11 * 22 17
Glanzmann thrombasthenia 115 109 125 126 129 142 138 31 257 198
Gray platelet syndrome * * * * * * 7 * 16 *
Hermansky-Pudlak syndrome 21 31 32 20 37 32 46 * 103 53
PAI-1 deficiency 106 83 53 61 87 68 75 17 280 112
Platelet function disorder, hereditary (nonspecific) 629 633 728 853 903 1007 989 195 2764 1522
Platelet release defect 17 26 28 21 23 15 17 * 46 31
Platelet storage pool disease 701 797 915 900 982 986 990 182 2916 1687
Thrombocytopenia, hereditary 129 111 116 153 129 192 180 64 653 220
Venous Thromboembolism (VTE) 3526 4886 6045 6481 6549 7603 8171 1684 25941 9720
Von Willebrand disease, type 1 5177 5084 5280 5360 5741 5818 6031 1163 16785 10044
Von Willebrand disease, type 1C 11 17 23 35 27 32 45 7 77 59
Von Willebrand disease, type 2A 329 337 344 386 427 449 480 63 919 672
Von Willebrand disease, type 2B 197 193 214 220 235 256 265 46 546 385
Von Willebrand disease, type 2M 151 170 208 211 224 239 212 87 458 354
Von Willebrand disease, type 2N 37 45 54 53 63 61 63 13 151 101
Von Willebrand disease, type 2, type unknown 83 114 160 191 192 165 168 33 430 260
Von Willebrand disease, type 3 232 231 249 259 252 253 266 48 440 353
Von Willebrand disease, type other 41 28 40 46 54 69 90 11 206 88
Von Willebrand disease, unknown 317 277 363 393 378 522 587 78 1550 524
History of HCV infection Yes 3034 2888 3175 3215 3208 3127 3144 741 5332 4535
No 14625 14119 15738 16715 18085 19277 19871 4328 42186 28445
Unknown 4261 4844 5048 4700 4714 4608 4587 1012 12661 6387
Not Applicable 3526 4886 6045 6481 6549 7603 8171 1684 25941 9720
History of HIV infection Yes 942 884 964 958 945 899 904 233 1538 1319
No 16414 15748 17599 18751 20120 21279 21978 4795 45597 31323
Unknown 4564 5219 5398 4921 4942 4834 4720 1053 13044 6725
Not Applicable 3526 4886 6045 6481 6549 7603 8171 1684 25941 9720

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 44 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 greater than zero but less than five 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.