A new oral therapy has been developed to treat idiopathic pulmonary fibrosis (IPF) and slow lung scarring. There is evidence which suggests it could be effective in the treatment of other progressive fibrosing interstitial lung diseases (PF-ILD).

Before this treatment can be routinely prescribed to treat PF-ILD it requires approval or market authorisation for this 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 and in order to establish the benefits that any new treatment could make to the lives of those living with Scleroderma and PF-ILD.

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.

Please only take this survey if:

• You have scleroderma, and;
• You have an interstitial lung disease that is not idiopathic pulmonary fibrosis.

The deadline for completion is the 00.01AM 25th January 2021.

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. Do you have scleroderma?

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* 2. Do you have Idiopathic Pulmonary Fibrosis?

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* 3. Do you have a progressive fibrosing interstitial lung disease (PF-ILD)?

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* 4. On a day-to-day basis how does your lung disease affect you and your quality of life?

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* 5. On a day-to-day basis how does your condition affect the lives of those who may be caring for you?

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* 6. Do you feel the drugs you are currently taking benefit the lung aspects of your condition?

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* 7. Please tell us why you answered yes or no to the above question?

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* 8. Do you experience side effects from your current treatment?

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* 9. The treatment is given in the form of soft capsules, taken up to twice daily by mouth.  It prevents lung function declining by slowing lung scarring.  


Do you believe this drug could benefit you compared to your current treatment(s)?

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* 10. The treatment is given in the form of soft capsules, taken up to twice daily by mouth.  It prevents lung function declining by slowing lung scarring. 

Like all medicines it can cause side effects some of which may be less severe such as diarrhoea, nausea. These include but are not limited to effects on the liver and kidneys.

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

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* 11. Are you concerned that you may not be able to eligible for this treatment should it become available for PF-ILD?

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* 12. Do you have any other comments?

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