Welcome to this survey for rare disease patient organisations

All HTA agencies in the UK utilise patient input in their evaluation of new health technologies. The patient perspective is particularly important in rare diseases where many aspects of the condition and how it affects patients are not well understood. HTA agencies recognise this and have been working towards improving the processes by which they obtain and utilise information provided by patients. 
   
This survey has been designed to gain an insight into the current range of experiences among rare disease patient groups regarding formal engagement in HTAs of new therapies, and how patient organisations generate information for their HTA submissions. This survey will help to uncover what is lacking in the system that would make the process better and more engaging for rare disease patient groups. 
   
Please also complete the survey if your patient group has no prior experience of participation in an HTA. 
   
The survey will take no more than 15 minutes to complete, and the initial results will be presented at the World Orphan Drugs Congress in Barcelona in November 2017. The survey can be completed anonymously, no participating group or individual will be identified, and all results will be presented in aggregate form only.
   
Thank you for participating. Your feedback is important and will help to better capture the patient voice in HTA processes for therapies to treat rare and ultra-rare conditions.
            
This survey was designed jointly by Sandra Nestler-Parr, trustee of a rare disease patient charity and market access specialist at Rare Access Ltd., and Sheela Upadhyaya, Associate Director of Highly Specialised Technologies at the National Institute of  Health and Care Excellence (NICE).

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