Freedom of Information Request: 0329 2019/20
I am writing to request some information about the treatment of haemophilia and also von Willebrand disease.
I understand these diseases have a form of register. How many are on your registers for:
Patients registered at 11/09/19
1. Haemophilia A – 234
2. Haemophilia B – 47
3. Von Willebrand Disease – 355
3a. Are you able to say how many are under 18 years old? 8
4. Over the last 3 months, how many patients with Haemophilia A have been treated with:
· Advate
· Afstyla
· Elocta
· Emicizumab (Hemlibra)
· Helixate
· Kogenate
· Novoseven RT
· Novoeight
· Nuwiq
· Refacto AF
· Factor Eight Inhibitor Bypass Activity
Patients with Haemophilia A treated June to August 2019
| All Patients | Mild | Moderate | Severe | |
| Advate | 27 | 2 | 25 | |
| Afstyla | ||||
| Elocta | 9 | 9 | ||
| Hemlibra* | 1 | 1 | ||
| Helixate | ||||
| Kogenate | ||||
| NovoSeven | ||||
| NovoEight | 15 | 15 | ||
| Nuwiq | 1 | 1 | ||
| Refacto AF | 33 | 2 | 9 | 22 |
| FEIBA | 7 | 1 | 2 | 4 |
*off trial only
If you are able to split the above by patients who have mild, moderate and severe Haemophilia, that would be useful, thanks.
5. Over the last year, how many patients have been treated with:
- Alphanate
- DDAVP (desmopressin)
- Haemate P
- Trabexamic acid
- Veyvondi
- Voncento
- Willate
- Willfact
- Willfactin
- Alprolix
- BeneFIX
- Idelvion
- Refixia
- Rixubis
Patients treated September 2018 to August 2019
| Alphanate | 0 |
| DDAVP | 30 |
| Haemate P | 0 |
| TxA | We do not hold this information |
| Veyvondi | 0 |
| Voncento | 37 |
| Wilate | 6 |
| Willfact |
1
|
| Wilfactin |
0
|
| Alprolix | 10 |
| BeneFix |
19
|
| Idelvion | 3 |
| Refixia |
0
|
| Rixubis | 0 |
