Impact ALS: European ALS patient and caregiver survey

[Admin_MND]

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

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.

For more information and to take part, please visit our website:
https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/impact-als-survey

[Barry52]

Hello MND admin,

Is the reference purely ALS or is the survey sponsor using the generic term for MND? I appreciate you won’t answer until Monday.

Barry

[denise]

I thought it was the same thing. Will be interested in the answer. I shall be doing the questionnaire.

[Barry52]

Just for clarity I am referring to the subsets i.e. PLS and PMA.

Barry

[matthew55]

What's that in English? 😉

[GaryM]

PLS - primary lateral sclerosis
PMA - progressive muscular atrophy

[matthew55]

Thank you

[GaryM]

Don't ask me to explain the difference though.

[Ellie]

Barry, in the US it was for ALS only.

There are quite a few ALS-specific questions and a section on the ALSFRS-R scores.

I guess you'll get the answer on Monday!

Love Ellie.

[denise]

I hope the answer is in a language we can all understand and the survey is done in a similar way.

[Admin_MND]

Hello MND admin,

Is the reference purely ALS or is the survey sponsor using the generic term for MND? I appreciate you won’t answer until Monday.

Barry

Hi Barry,

The study team have responded to say: "We use the terms both ALS and MND in the broadest possible way so we would welcome responses from people with subsets of MND, such as PLS and PMA, and their caregivers as well as those with ALS."

For those of you who are unsure on the different terms, and would like to read more about the different types of MND, you can find more information on our website - https://www.mndassociation.org/about...cts-about-mnd/

[Ellie]

For those doing the survey and feel that it's too long and arduous, please know that you don't have to finish the whole survey in one chunk. You can numerous breaks, over days if needed, and the survey reopens where you left off.

So please don't be put off doing it 👍

[denise]

Well i did it from a caregiver point of view. Took a long time but I've done my bit.
next I will do it with Stephen but not today 😴

[denise]

Stephen has done his bit.

[Barry52]

I did mine today. I think the estimated time for completion is optimistic as it took me nearly an hour.