Haematology (FOI/373)


Message from the customer - 17 December 2020

About your request for information

Subject - what is this request about?
Request on the incidence and treatment of Haemophilia

What information are you requesting?
Dear University Hospitals Coventry and Warwickshire NHS Trust,

I am analysing the incidence and treatment of Haemophilia. Could you kindly provide answers to the following questions.

Q1. In the last three months, how many patients have been treated by your haemophilia centre with the following products?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q2. In the last three months, how many patients were treated with the following products for mild Haemophila A ONLY?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q3. For patients treated with Hemlibra in the last three months, please provide
• The number of haemophilia A patients with inhibitors
• The number of mild haemophilia A patients with inhibitors

Q4. How many haemophilia A patients are registered with your centre, and how many of these patients are classified as exhibiting mild, moderate, or severe disease.

Thank you in advance for your assistance and have a happy Christmas and New Year.

Kind regards,
Jennifer Jebasundari
[email protected]







 




Message from the customer - 22 January 2021

About your request for information

Subject - what is this request about?
Request on the incidence and treatment of Haemophilia

What information are you requesting?
Dear University Hospitals Coventry and Warwickshire NHS Trust,
I hope that you are well.
I am writing in reference to an initial request sent on 16th of December 2020 regarding the Freedom of Information request on the incidence and treatment of Haemophilia. I completely understand the current pressures the NHS is facing, but it would be helpful if you/ your team would help me with the below questions;

Q1. In the last three months, how many patients have been treated by your haemophilia centre with the following products?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q2. In the last three months, how many patients were treated with the following products for mild Haemophila A ONLY?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q3. For patients treated with Hemlibra in the last three months, please provide
• The number of haemophilia A patients with inhibitors
• The number of mild haemophilia A patients with inhibitors

Q4. How many haemophilia A patients are registered with your centre, and how many of these patients are classified as exhibiting mild, moderate, or severe disease.


Dear ,
I hope that you are well.
I am writing in reference to an initial request sent on 16th of December 2020 regarding the Freedom of Information request on the incidence and treatment of Haemophilia. I completely understand the current pressures the NHS is facing, but it would be helpful if you/ your team would help me with the below questions;

Q1. In the last three months, how many patients have been treated by your haemophilia centre with the following products?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q2. In the last three months, how many patients were treated with the following products for severe Haemophila A ONLY?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q3. For patients treated with Hemlibra in the last three months, please provide
• The number of haemophilia A patients with inhibitors
• The number of severe haemophilia A patients with inhibitors

Q4. How many haemophilia A patients are registered with your centre, and how many of these patients are classified as exhibiting mild, moderate, or severe disease.


Kind regards,
***** *****
*****.*****@*****





 




Message from UHCW - 26 January 2021

Part of FOI/00000789 which was merged into this case

 

 

We are still working on your original request, my colleague emailed you on 21/01/21 requesting an extension.

 

 

This updated duplication will be merged with your original request.

 




Message from the customer - 28 January 2021

?I am currently on annual leave until. Please send any urgent messages to [email protected] or telephone 02476 968771.
Thank you
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Message from UHCW - 01 February 2021

Our Ref: FOI/373
Date: 1st February 2021


By email only

 

Dear Requester


We write further to your request for information under the Freedom of Information Act received 17th December 2020.  We have set out your request, together with our response below. 

Q1. In the last three months, how many patients have been treated by your haemophilia centre with the following products?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q2. In the last three months, how many patients were treated with the following products for mild Haemophila A ONLY?
• Advate
• Adynovi
• Elocta
• Esperoct
• Factor Eight Inhibitor Bypass Activity (FEIBA)
• Hemlibra
• Jivi
• NovoEight
• NovoSeven RT
• Obizur
• Refacto AF

Q3. For patients treated with Hemlibra in the last three months, please provide
• The number of haemophilia A patients with inhibitors
• The number of mild haemophilia A patients with inhibitors

Q4. How many haemophilia A patients are registered with your centre, and how many of these patients are classified as exhibiting mild, moderate, or severe disease.

 
We believe that this FOI enquiry is being made to multiple NHS trusts and that it is being repeated every six months or so. The information requested is potentially commercially sensitive as it relates to the numbers of patients on specific proprietary Brands of therapy; in some cases, at any provider, the numbers of patients on any given brand may be so small as to compromise patient confidentiality. 

Please refer to the United Kingdom Haemophilia Centre Doctors" Organisation (UKHCDO) annual report which reports numbers of patients per treatment centre, the numbers of patients on regular (prophylaxis) treatment, and market share of different products across the U.K. Data which is concatenated at this level does not compromise patient confidentiality or commercially sensitive information.


As we have provided the information that we do hold your request is now closed.  We trust that this is satisfactory but if you are dissatisfied with the way that it has been handled you have the right to ask for an internal review.  Internal review requests should be submitted within two months of the date of receipt of the response to your original letter and should be addressed to: Geoff Stokes, Director of Corporate Affairs, UHCW, Clifford Bridge Road, Coventry CV2 2DX.


If you are not content with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision.  The Information Commissioner can be contacted at: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.


Yours sincerely

 

 

 

Andrea Phillips
FOI & Access to Health Records Manager