The UK SMA Patient Registry has asked TreatSMA to reach out to the community to help the research team at Columbia University, New York who are currently running a project focused on fatigue in SMA.
The survey criteria is for eight years old and above and not restricted to any type of SMA or any country. However, the survey is only written in English.
The survey is open for a few weeks and the research team would like to encourage you to complete if you have not already done so. The Perceived Fatigue survey can be found here:
https://redcap.sac-cu.org/surveys/?s=X889A487MRMFFHJ8
About the project:
The physiotherapist Jacqueline Montes and her team, based at Columbia University, New York, would like to invite you to take part in a research project focused on developing a survey to measure perceived fatigue in SMA. Your participation in this study will help the team determine if the proposed Pittsburg Fatigability Scale for SMA (PFS for SMA) is appropriate.
The survey will take approximately 1 hour to complete. All data will be collected anonymously using an online survey via REDCap, and no individual identifying information will be collected.
While there are no direct benefits to the participants in this study, findings from this study will be informative towards continuing to better understand the patient SMA experience, as it relates to perceptions of fatigue with daily activities. The researchers hope that the findings of this study will be instructive towards continuing to explore alternative treatment options to help address the clinical symptom of fatigue and characteristic fatigability experienced by individuals with SMA.
If you are interested, please click the link above to access the survey. If you have questions at any time, please feel free to contact Jacqueline at jm598@cumc.columbia.edu.
Thank you in advance for your participation!
