SMA Newsroom

ResearchAdvocacyMar 30, 2023

The Daily Life Study is now LIVE

Have you ever wondered how the accessibility of your environment, your treatment status, or your sleep quality impact the way you are feeling? Why are some days easier than others? Why are some moments of the day or week more challenging? 

OdySMA goes live!

Today we want to celebrate with you the official launch of our OdySMA project. OdySMA is an initiative that aims at one and only goal: that no one is left behind in the access to treatment journey.

OdySMA is a dynamic tool that we are using to create an SMA atlas that visualises systematically collected data to illustrate access pathways. The goal is to reveal the 'quest to access' of people living with SMA by mapping, visualising and centralising knowledge and data around access issues.

 

ResearchNov 21, 2022

New publication: Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy.

Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy: Results of the SMA-TOOL Study.

Outcome measures traditionally used in spinal muscular atrophy (SMA) clinical trials are inadequate to assess the full range of disease severity. The aim of this study was to assess the psychometric properties of a set of existing questionnaires and new items, gathering information on the impact of SMA from the patient and caregiver perspectives.