Impact ALS: European ALS patient and caregiver survey

In an effort to include your perspective to help guide the development of new drugs and services for ALS, we are conducting a survey of patients with ALS and of caregivers. IMPACT-ALS is a research collaboration between industry, European ALS doctors and ALS charities.

The IMPACT-ALS (Investigating and Measuring Patient and Caregiver Trends about ALS) Europe Survey will gather information on disease burden, functional outcomes and treatment views from patient and caregiver perspectives in European populations.

This anonymous online survey will allow for comparisons of patient and caregiver perspectives and capture how these perspectives differ across participating countries. The survey will build on the foundation developed by the IMPACT-ALS US survey to ensure the voices of European individuals with ALS and their caregivers can inform global drug development and access.

Results from this survey are planned to be published in peer-reviewed journals and other channels. The results of the survey will be accessible to all participants.

What does taking part involve?

Taking part in this study involves clicking the link to the online survey on one occasion only.

Participation is anonymous and completing the survey is expected to take 35-45 minutes in total. The online survey is divided into 5 sections asking about;

  • Disease background
  • Living with ALS
  • Approaches to treating ALS
  • Demographics,
  • Caregiver-specific burden of disease.

Study location

The online survey will be run across 9 countries: Ireland, UK, France, Belgium, Netherlands, Germany, Sweden, Spain, Italy.

If you would like to take part in the online survey, please click one of the buttons below, depending on which type of participant you are.

These surveys are now closed. Thank you for taking part.

Who can take part?

People with MND and their informal caregivers.

Note, there are separate surveys for people with MND and their carers and there is a further separate version for bereaved caregivers of people with MND who we are also interested in hearing from.

How can I take part?

To take part in the survey, please click one of the buttons on this page.


If you have any questions or require any further information about this study then you can contact the study team: or


Industry Partners - Cytokinetics, Biogen and Ionis

Expiry date: 31 December 2020

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262