TABLE 2. Comparison of patients served by hemophilia treatment centers with subset of patients who also participated in the Community Counts patient registry — 2016–2018, United States.
| Hemophilia type and patient characteristics | HTC population profile |
Patient registry |
Registry participation (%) |
|---|---|---|---|
| No. (%)* | No. (%) | ||
|
Hemophilia A
| |||
|
Total no.
|
15,859
|
7,811
|
49.3
|
|
Factor deficiency level†
| |||
| Severe |
7,597 (47.9) |
4,489 (57.5) |
59.1 |
| Moderate |
2,601 (16.4) |
1,293 (16.6) |
49.7 |
| Mild |
5,418 (34.2) |
1,991 (25.5) |
36.7 |
| Unknown |
243 (1.5) |
38 (0.5) |
15.6 |
|
Sex
| |||
| Female |
1,574 (9.9) |
309 (4.0) |
19.6 |
| Male |
14,285 (90.1) |
7,502 (96.0) |
52.5 |
|
Age group (yrs)
| |||
| <2 |
461 (2.9) |
204 (2.6) |
44.3 |
| 2–10 |
3,072 (19.4) |
1,645 (21.1) |
53.5 |
| 11–19 |
3,553 (22.4) |
1,999 (25.6) |
56.3 |
| 20–44 |
5,901 (37.2) |
2,699 (34.6) |
45.7 |
| 45–64 |
2,056 (13.0) |
945 (12.1) |
46.0 |
| ≥65 |
816 (5.1) |
319 (4.1) |
39.1 |
|
Race
| |||
| Asian/American Indian or Alaska Native/Native Hawaiian or other Pacific Islander |
897 (5.7) |
356 (4.6) |
39.7 |
| Black |
1,803 (11.4) |
950 (12.2) |
52.7 |
| White |
12,371 (78.0) |
6,078 (77.8) |
49.1 |
| More than one race |
198 (1.2) |
114 (1.5) |
57.6 |
| Unknown |
590 (3.7) |
313 (4.0) |
53.1 |
|
Ethnicity
| |||
| Hispanic |
2,994 (18.9) |
1,286 (16.5) |
43.0 |
| Non-Hispanic |
12,672 (79.9) |
6,450 (82.6) |
50.9 |
| Unknown |
193 (1.2) |
75 (1.0) |
38.9 |
|
Insurance status
| |||
| Insured |
15,338 (96.7) |
7,604 (97.3) |
49.6 |
| Uninsured |
362 (2.3) |
159 (2.0) |
43.9 |
| Unknown |
159 (1.0) |
48 (0.6) |
30.2 |
|
Factor deficiency level,† by age group (yrs)
| |||
| Severe | |||
| <2 |
227 (3.0) |
138 (3.1) |
60.8 |
| 2–10 |
1,549 (20.4) |
1,007 (22.4) |
65.0 |
| 11–19 |
1,756 (23.1) |
1,172 (26.1) |
66.7 |
| 20–44 |
3,191 (42.0) |
1,707 (38.0) |
53.5 |
| 45–64 |
729 (9.6) |
396 (8.8) |
54.3 |
| ≥65 |
145 (1.9) |
69 (1.5) |
47.6 |
| Moderate | |||
| <2 |
90 (3.5) |
36 (2.8) |
40.0 |
| 2–10 |
526 (20.2) |
273 (21.1) |
51.9 |
| 11–19 |
571 (22.0) |
327 (25.3) |
57.3 |
| 20–44 |
919 (35.3) |
417 (32.3) |
45.4 |
| 45–64 |
352 (13.5) |
181 (14.0) |
51.4 |
| ≥65 |
143 (5.5) |
59 (4.6) |
41.3 |
| Mild | |||
| <2 |
130 (2.4) |
29 (1.5) |
22.3 |
| 2–10 |
953 (17.6) |
359 (18.0) |
37.7 |
| 11–19 |
1,200 (22.1) |
494 (24.8) |
41.2 |
| 20–44 |
1,699 (31.4) |
559 (28.1) |
32.9 |
| 45–64 |
927 (17.1) |
360 (18.1) |
38.8 |
| ≥65 |
509 (9.4) |
190 (9.5) |
37.3 |
|
Hemophilia B
| |||
|
Total no.
|
4,948
|
2,095
|
42.3
|
|
Factor deficiency level†
| |||
| Severe |
1,340 (27.1) |
763 (36.4) |
56.9 |
| Moderate |
1,797 (36.3) |
749 (35.8) |
41.7 |
| Mild |
1,742 (35.2) |
572 (27.3) |
32.8 |
| Unknown |
69 (1.4) |
11 (0.5) |
15.9 |
|
Sex
| |||
| Female |
652 (13.2) |
122 (5.8) |
18.7 |
| Male |
4,296 (86.8) |
1,973 (94.2) |
45.9 |
|
Age group (yrs)
| |||
| <2 |
145 (2.9) |
52 (2.5) |
35.9 |
| 2–10 |
969 (19.6) |
404 (19.3) |
41.7 |
| 11–19 |
1,041 (21.0) |
489 (23.3) |
47.0 |
| 20–44 |
1,659 (33.5) |
674 (32.2) |
40.6 |
| 45–64 |
782 (15.8) |
337 (16.1) |
43.1 |
| ≥65 |
352 (7.1) |
139 (6.6) |
39.5 |
|
Race
| |||
| Asian/American Indian or Alaska Native/Native Hawaiian or other Pacific Islander |
173 (3.5) |
83 (4.0) |
48.0 |
| Black |
383 (7.7) |
184 (8.8) |
48.0 |
| White |
4,251 (85.9) |
1,749 (83.5) |
41.1 |
| More than one race |
18 (0.4) |
10 (0.5) |
55.6 |
| Unknown |
123 (2.5) |
69 (3.3) |
56.1 |
|
Ethnicity
| |||
| Hispanic |
496 (10.0) |
221 (10.5) |
44.6 |
| Non-Hispanic |
4,390 (88.7) |
1,849 (88.3) |
42.1 |
| Unknown |
62 (1.3) |
25 (1.2) |
40.3 |
|
Insurance status
| |||
| Insured |
4,204 (85.0) |
1,914 (91.4) |
45.5 |
| Uninsured |
664 (13.4) |
164 (7.8) |
24.7 |
| Unknown |
80 (1.6) |
17 (0.8) |
21.3 |
|
Factor deficiency level,† by age group (yrs)
| |||
| Severe | |||
| <2 |
50 (3.7) |
24 (3.1) |
48.0 |
| 2–10 |
278 (20.7) |
179 (23.5) |
64.4 |
| 11–19 |
253 (18.9) |
170 (22.3) |
67.2 |
| 20–44 |
519 (38.7) |
268 (35.1) |
51.6 |
| 45–64 |
190 (14.2) |
95 (12.5) |
50.0 |
| ≥65 |
50 (3.7) |
27 (3.5) |
54.0 |
| Moderate | |||
| <2 |
42 (2.3) |
19 (2.5) |
45.2 |
| 2–10 |
365 (20.3) |
141 (18.8) |
38.6 |
| 11–19 |
402 (22.4) |
185 (24.7) |
46.0 |
| 20–44 |
581 (32.3) |
227 (30.3) |
39.1 |
| 45–64 |
274 (15.2) |
130 (17.4) |
47.4 |
| ≥65 |
133 (7.4) |
47 (6.3) |
35.3 |
| Mild | |||
| <2 |
48 (2.8) |
8 (1.4) |
16.7 |
| 2–10 |
312 (17.9) |
82 (14.3) |
26.3 |
| 11–19 |
378 (21.7) |
134 (23.4) |
35.4 |
| 20–44 |
538 (30.9) |
177 (30.9) |
32.9 |
| 45–64 |
301 (17.3) |
107 (18.7) |
35.5 |
| ≥65 | 165 (9.5) | 64 (11.2) | 38.8 |
Abbreviation: HTC = hemophilia treatment center.
* Column percentages might not total 100% because of rounding.
† Hemophilia severity is defined by level of clotting factor activity in circulating blood and comparison to an international standard. Severe hemophilia is defined as <1% activity, moderate hemophilia is defined as 1%–5% activity, and mild hemophilia is defined as >5% activity. For the vast majority of persons classified as mild, factor level activity is ≤50%. However, 8.4% of persons in the HTC population profile and 1.8% of persons in the registry who are classified as having mild hemophilia have factor activity levels >50%; these persons are nonetheless reported by their HTC as having a diagnosis of hemophilia.