A new preventative therapy has been developed to protect those with weakened immune systems from COVID-19 infection.  The treatment is given pre-exposure to the virus, which means it cannot be given to someone who has recently been exposed to the virus through contact with an infected person or someone who later tests positive for COVID-19. Clinical trials found that the treatment reduced the risk of developing symptomatic COVID-19 by 77%, with protection lasting for up to six months.
Before this treatment can routinely be used in those with weakened immune systems, it requires approval or market authorisation via the National Institute of Health and Clinical Excellence (NICE). NICE, as part of this process, are carrying out an assessment of the potential clinical and cost effectiveness of this drug and are keen to gather the views of various stakeholders such as professional bodies, NHS commissioning organisations, and patient groups. NICE wants to understand the condition and current treatments from the patient perspective to establish the benefits that any new treatment could make to the lives of people who live with scleroderma.
  
Through this survey SRUK hope to gain insight from our patient community, to ensure that the feedback we offer NICE is accurate and relevant. It should take no more than 10 minutes of your time.  
The deadline for completion is 00.01am, Tuesday 13th September 2022.
Survey responses are anonymous, the data will be viewed by SRUK to inform our report to NICE.
If you have any questions relating to the survey, please contact info@sruk.co.uk. 
Thank you for your participation!

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* 1. Which type of scleroderma do you have?

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* 2. Have you ever been told by a medical professional that your immune system is weakened (immunocompromised or immunosuppressed) because of your condition or the medicines you take?

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* 3. Have you been vaccinated against COVID-19? Please select the option which best applies to you.

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* 4. Please tell us if you take any of the following medicines:

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* 5. Have you ever been told by a doctor that you may not make an effective immune response to the COVID-19 vaccine (or any other vaccine) due to your medical condition or the medicines you take?

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* 6. When the pandemic first started were you advised to shield to avoid being infected with COVID-19?

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* 7. Are you still shielding or limiting social contact because of the virus?

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* 8. How is COVID-19, and the perceived risk of you becoming infected, affecting the lives of those you live with and loved ones who might also be caring for you?

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* 9. Have you ever been prescribed or given any of the following anti-COVID-19 treatments (Paxlovid, Xevudy, Veklury or Lagverio) after testing positive for COVID-19? This may have been part of a clinical study.

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* 10. Do you feel protected through the current NHS vaccination programme and antiviral drugs available?

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* 11. Please tell us why you answered yes or no to the previous question.

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* 12. One dose of the treatment consists of two injections which are injected into a muscle by a healthcare professional. The treatment must be given on a six-monthly basis. It cannot be given to prevent new infection if you have recently been exposed to the virus through contact with an infected person. 

Do you believe this treatment could benefit you compared to the currently available options?

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* 13. Please tell us why you answered yes or no to the previous question.

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* 14. One dose of the treatment consists of two injections which are injected into a muscle by a healthcare professional. The treatment must be given on a six-monthly basis. It cannot be given to prevent new infection if you have recently been exposed to the virus through contact with an infected person.

Like all medicines it may cause side effects in a very small number of individuals. Some of these may be more severe such as allergic reactions which may cause swelling and breathing difficulties.

Less severe side effects reported include skin rashes or injection site soreness.

Would you be concerned that the benefits of treatment may be outweighed by the side effects?

 

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* 15. Please tell us why you answered yes or no to the previous question.

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* 16. Are you concerned that you may not be eligible for, or able to access, this treatment should it be approved for use in people with weakened immune systems?

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* 17. Do you have any other comments?

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