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Dear Members and Friends,


Clinical Trials Guidelines Workshop: Participate Remotely

We are writing to share information with the ALS/MND community.

On 17-19 March, investigators and clinicians will come together outside Washington, DC, to discuss the development of ALS/MND Clinical Trials Guidelines. These guidelines are intended to streamline the process of developing and testing new treatments in ALS/MND.

Here is some background information on the Workshop, provided by its organisers:
"There have been 50 randomised clinical trials (RCTs) in the past half-century in ALS/MND, and 23 of those RCTs were performed in the last 10 years. The only medication we have to prescribe to patients is Riluzole, which only offers modest benefits. Lack of known causes and pathogeneses in ALS make focused clinical trials difficult and reliable biomarkers are not available. Further, we do not know if the medications tested have ever reached or biologically influenced the presumed drug targets. While the cause and pathogeneses still need to be discovered, we cannot wait for this discovery to move forward. We believe clinical trials in ALS can be further improved. Several American and European investigators volunteered to organise an international workshop to conduct an evidence-informed review of past clinical trials and update the ALS/MND Clinical Trial Airlie House Guidelines, which were originally published 16 years ago. This Workshop will be held on 17-19 March at the Airlie House in Warrenton, Virginia."

A live webinar of the Workshop will be available for those who can't attend in person. International advocates, PALS, caregivers and any others affected by ALS/MND are invited to participate remotely!

For more information and to register for the webinar, click below.
In addition to the live webinar, recorded video of the workshop will also be available to view following the event.

Please note: This workshop is not organised by the Alliance. If you have specific questions, please contact Georgia Christodoulou.

Best wishes,

Rachel Patterson, General Manager
The International Alliance of ALS/MND Associations

Copyright © 2016 The International Alliance of ALS/MND Associations, All rights reserved.
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