XLH UK & Metabolic Support UK are providing an understand of what it is like to live with XLH as part of the evaluation of Burosumab in England, Scotland and Wales. This means that England, Scotland and Wales will be making a decision within the next 1-2 years on whether to recommend Burosumab for funding and prescibing by the NHS.
As part of this assessment, we have been asked to submit patient and carer views on living with XLH and the treatment options currently available. We would like to obtain your views on the impact XLH has on your quality of life ranging from daily activities to accessing treatments.
Your submission will be anonymous and the answers you provide will be used to ensure we present an up to date representation of the voice of patients and carers. The responses you provide will have no negative impact on the care you currently receive.
Your email address is only asked to avoid duplication of records and will not be shared with anyone outside Metabolic Support UK & XLH UK. This survey will take approximately 25-30 minutes to complete.
The anonymised data collected in this survey may also be used in other research and or used for marketing purposes for XLH UK and Metabolic Support UK.
We would like to use some quotes in our submission, to illustrate the points we make, but will not use any names unless you indicate you would be happy for us to do this.