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<p>Data on the average number of bleeds for people with severe haemophilia A and haemophilia
B is shown in the following table.</p><table><tbody><tr><td rowspan="2"><p>Diagnosis</p></td><td
rowspan="2"><p>Patients treated 2018<br> (number)</p></td><td colspan="3"><p>Bleed
count 2018</p></td></tr><tr><td><p>Mean</p></td><td><p>Standard deviation</p></td><td><p>Median
(interquartile range)</p></td></tr><tr><td><p>Severe Haemophilia A</p></td><td><p>1,553</p></td><td><p>4.1</p></td><td><p>8.2</p></td><td><p>1
(0 - 5)</p></td></tr><tr><td><p>Severe Haemophilia B</p></td><td><p>263</p></td><td><p>3.7</p></td><td><p>7.6</p></td><td><p>1
(0 - 4)</p></td></tr></tbody></table><p> </p><p>The National Haemophilia Database
have very limited bleed-level data for patients with mild or moderate haemophilia,
as these patients do not bleed frequently and therefore do not generally require home
therapy. The non-severe patients using Haemtrack are skewed towards the severe end
of moderate and anyone with zero bleeds is very unlikely to be reporting. For this
reason, they have excluded non-severe patients from these results, as they would make
the data unlikely to be robust.</p><p> </p><p>It should be noted that the following
limitations apply to this data:</p><p> </p><p>1. The data is derived from patient-reported
Haemtrack home therapy diary data.</p><p>2. The data is limited to patients who require
home-therapy.</p><p>3. These results are prone to reporting bias since uncompliant
patients and patients treated on-demand, treated only when they bleed, are under-represented
in this sample. The data may therefore paint a slightly optimistic picture.</p><p>4.
About 85-90% of clinically severely affected (less than 2% VIII/IX) patients are managed
with regular prophylaxis to prevent bleeding. Prior to prophylaxis, patients treated
on-demand bled between twice a week and once a fortnight and, as the figures show,
the mean annualised bleed rate has been dramatically reduced to about four per year.
However, our aim is for the patients to be bleed free, without which the joints will
not be fully protected from bleeding.</p>
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