Thank you for your interest in the LifeArc MND community survey. The purpose of this survey is to understand the challenges that people affected by MND experience in daily life that might be helped by technology. We would like to hear from people affected by MND, including people living with the condition, current and bereaved caregivers, and people with a high genetic risk of getting MND.

We aim to support the development of digital health technologies that improve life for people living with MND. When we talk about technology, this includes things like wearable devices, smartphone apps, and platforms for remote healthcare.


Who is LifeArc?

LifeArc is a self-funded, non-profit medical research organisation and a registered charity. LifeArc helps to take scientific ideas out of the lab and turn them into healthcare innovations for people who need them most. MND is one of the areas that LifeArc focus their research on.


How will this survey help MND technologies research?

One of LifeArc’s MND research priorities is to develop technologies that support daily living for people affected by MND. To support this, LifeArc plan to run a funding call for researchers to apply for money to develop technologies. Before we do this, we need to understand what are the most important challenges that people affected by MND experience in daily life.

By filling out this survey, you are helping LifeArc to define areas of focus for the technologies funding call and helping to ensure that research is focused on what matters most to people affected by MND.

This survey has been developed with feedback from people affected by MND, to help ensure it's meaningful for people completing it.

How will we use your data?

Information about how we collect and use your personal information as part of the MND Translational Challenge can be found in the MND Translational Challenge Data Privacy Notice, which can be read here. Your information will be processed confidentially and securely. It will not be shared with third parties or be utilised for any other purpose.

We may share the information collected in this survey via reports, presentations and other communications. Any information shared in this way will be aggregated with other survey responses and will be anonymised so that there will be no way to identify those who took part. These anonymised insights may be shared publicly by LifeArc and its charity partners.

If you have any questions or concerns about our use of your personal information, please email us at LifeArcTeam@pharmagenesis.com.


Completing this survey

This survey saves your responses when each page is completed and you press ‘Next’ at the bottom of the page. You can complete the survey all at once, or come back to the survey later (you must use the same device as you started it on). This survey is estimated to take around 20 minutes.

This survey has between 8 and 10 questions on the topic, then a few questions about your MND experience and your demographics. The demographics questions are for us to learn who the survey is reaching.

Question Title

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If you have any questions or concerns about our use of your personal information, please email us at LifeArcTeam@pharmagenesis.com.

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