The Patient Reported Outcomes for MS Initiative Global e-Health Survey |
You are invited to participate in a survey created for us, by us.
By working together, we can create a change for the better and improve how we support all people living with MS. Together we are stronger.
This survey aims to understand attitudes towards using digital tools such as apps and websites on smartphones, tablets and computers and wearable devices (such as smart watches or rings) to capture information about your experiential knowledge.
We want to explore what digital tools are available to people with MS worldwide, potential advantages to using them, concerns you may have about digital tools (including data security), and any barriers to using these tools over a long time period.
The aspects of MS often measured in clinic visits provide a one-time snapshot of a limited number of symptoms that are important to people with MS.
Digital tools that allow us to continually monitor our MS - either by actively inputting data and information about our symptoms and how we are feeling, or by actively or passively collecting information about our function - can provide crucial information about changes in our MS over time.
We might choose to view these data ourselves, share them with our clinicians to guide our care, or with researchers to help develop new therapies and strategies for clinical management.
Participating in this survey will help us better understand what is working in terms of digital tools for people with MS, and what needs to be improved.
It will take approximately 30 minutes, but you’ll have the option to pause and come back to it later. The results will support other people with MS, researchers and healthcare providers in the identification and improvement of digital tools for use by you – as well as in MS research, clinical trials and clinical care.
Your participation is crucial to our efforts – take part and join the team!
By working together, we can create a change for the better and improve how we support all people living with MS. Together we are stronger.
This survey aims to understand attitudes towards using digital tools such as apps and websites on smartphones, tablets and computers and wearable devices (such as smart watches or rings) to capture information about your experiential knowledge.
We want to explore what digital tools are available to people with MS worldwide, potential advantages to using them, concerns you may have about digital tools (including data security), and any barriers to using these tools over a long time period.
The aspects of MS often measured in clinic visits provide a one-time snapshot of a limited number of symptoms that are important to people with MS.
Digital tools that allow us to continually monitor our MS - either by actively inputting data and information about our symptoms and how we are feeling, or by actively or passively collecting information about our function - can provide crucial information about changes in our MS over time.
We might choose to view these data ourselves, share them with our clinicians to guide our care, or with researchers to help develop new therapies and strategies for clinical management.
Participating in this survey will help us better understand what is working in terms of digital tools for people with MS, and what needs to be improved.
It will take approximately 30 minutes, but you’ll have the option to pause and come back to it later. The results will support other people with MS, researchers and healthcare providers in the identification and improvement of digital tools for use by you – as well as in MS research, clinical trials and clinical care.
Your participation is crucial to our efforts – take part and join the team!
This survey is reserved for people aged 18 and over.
Please note that participation in the survey is voluntary. The survey is completely anonymous, and it will not be possible to trace your identity in any way in full compliance with the current privacy legislation in Europe (GDPR - Regulation 2016/679).
For more information, visit the PROMS Initiative website at: proms-initiative.org Please send any questions to: surveyproms@fismets.it
The European Charcot Foundation (ECF) and the MS International Federation (MSIF) lead and coordinate this study, building on the experience and expertise of the Italian MS Society (AISM), which acts as the lead agency on behalf of the global MSIF movement.