In Progress

The ICHOM Working Group (WG) for Spinal Muscular Atrophy (SMA) has now proposed a minimum set of health outcomes that matter to people with lived experience of SMA.

To explore whether these outcomes are meaningful and reflect what people with lived experience find most important, we invite people with experience of SMA to participate in the Patient Validation Survey. Your feedback will play a crucial role in shaping the WG’s final recommendations, ensuring the outcomes selected genuinely represent what is most important to SMA patients.

Please complete the survey here: https://ichom.co1.qualtrics.com/jfe/form/SV_1QQ8rdobEvolkbQ

We currently have the ethical approvals or exemptions to disseminate this survey in the UK.

Are you implementing ICHOM Sets?

If your are implementing ICHOM Sets, please help us understand more about your journey by filling in our Implementation Survey. Click on the link below to complete:

View Survey

Implementation Map

We would like to add you to our Implementation Map if you are implementing or have implemented ICHOM Sets. Please click on the button below for more information.

Find Out More

Team that developed this set