Internal Reference Number: FOI_5277
Date Request Received: 08/09/2019 08:00:20
Date Request Replied To: 02/10/2019 09:23:58
This response was sent via: By Email
Request Summary: Treatment of haemophilia and von Willebrand disease
Request Category: Private Individuals
|Question Number 1:|
I understand these diseases have a form of register. How many are on your registers for:
• Haemophilia A
• Haemophilia B
• Von Willebrand Disease – are you able to say how many are under 18 years old as well?
|Answer To Question 1:|
We cannot answer this as we do not keep a local register of patients with Haemophilia or Von Willebrand disease. The database is held centrally.
I have found a link here: http://www.ukhcdo.org/nhd/ which suggests the location of the database is Manchester.
|Question Number 2:|
Over the last 3 months, how many patients with Haemophilia A have been treated with:
• Emicizumab (Hemlibra)
• Novoseven RT
• Refacto AF
• Factor Eight Inhibitor Bypass Activity
If you are able to split the above by patients who have mild, moderate and severe Haemophilia, that would be useful, thanks.
|Answer To Question 2:|
Our pharmacy system does not hold the diagnosis of patients.
We are unable to tell what diagnosis the drug was being used for so have completed the report based on trust wide total usage in number of patients.
. Advate <5
. Afstyla 0
. Elocta 0
. Emicizumab (Hemlibra) 0
. Helixate 0
. Kogenate 0
. Novoseven RT 0
. Novoeight 0
. Nuwiq 0
. Refacto AF 0
. Factor Eight Inhibitor Bypass Activity 0
|Question Number 3:|
Over the last year, how many patients have been treated with:
• DDAVP (desmopressin)
• Haemate P
• Trabexamic acid
|Answer To Question 3:|
. Alphanate 0
. DDAVP (desmopressin) >43 cannot determine as drug is issued as stock to wards/clinics
. Haemate P 0
. Tranexamic acid >174 cannot determine as drug is issued as stock to wards/clinics
. Veyvondi 0
. Voncento 0
. Willate 0
. Willfact 0
. Willfactin 0
. Alprolix 0
. BeneFIX 0
. Idelvion 0
. Refixia 0
. Rixubis 0
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