Scleroderma and progressive fibrosing interstitial lung disease

Would you like to have your say on whether a treatment is made available for progressive fibrosing interstitial lung disease (PF-ILD)?

Do you have Scleroderma and a progressive fibrosing interstitial lung disease?  

Would you like to have your say on whether current treatments are adequate? 

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 it can be routinely prescribed for this, it requires 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 therapy’s clinical and cost effectiveness 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 in order to establish the benefits that any new treatment could make to the lives of those living with Scleroderma and PF-ILD.  

SRUK, as part of our role in championing access to more effective treatments is aware of the need to actively contribute to this process. We are inviting patients with systemic sclerosis and PF-ILD to help inform our response to this consultation by participating in our short survey which will help inform our response to this important consultation.  

Our questionnaire should take no more than 10 minutes of your time! 

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  

Click here to complete the questionnaire.