Survey Results Update from OpenVie on behalf of Roche

13 March 2020

Thank you to everyone who completed the survey by OpenVie, on behalf of Roche, that was aiming to collect data on the healthcare and non-healthcare costs from the perspective of both people living with SMA and their unpaid carers. This was to support Roche in making future submissions to UK authorities regarding access to a potential future drug treatment.

The survey was completed by 123 people who have SMA, and 81 unpaid carers. We have been informed that data analysis has started and they will be looking at first results in early April. They plan to write a report to share with UK Health Technology Agencies, such as the National Institute for Health and Care Excellence (NICE) or the Scottish Medicines Consortium (SMC), for the purpose of improving care.