Old 10-11-2017, 04:28 PM #1 (permalink)
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Default ALS survey

I'm no longer eligible, so don't know how good a study it is, but in case you're not on the mailing list:

This initiative, titled IMPACT-ALS (Investigating and Measuring Patient And Caregiver Trends about ALS), is a collaboration with three industry partners (Biogen, Ionis, and Cytokinetics) and several clinicians.

The survey is intended to identify the burden of ALS and concerns during the progression of the disease, preferences for treatment, and any differences in perceptions between patients and caregivers. Results from this survey are planned to be published in peer-reviewed journals and other channels, such as the international ALS meeting held in Boston this December. Results will also be accessible to all participants.

They are asking for completes by Nov. 1. Here is the link.

Last edited by lgelb : 10-11-2017 at 04:37 PM
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worrieddaughter77 (10-11-2017)
Old 10-11-2017, 11:11 PM #2 (permalink)
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Default Re: ALS survey

Thank you, Laurie! I keep getting amazed at how knowledgeable you and many other awesome people on here are! <3
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