The National ALS Registry Newsletter- 5th Edition May 2020

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COVID-19 and National ALS Biorepository Update and Survey Reminders


Due to COVID-19, the National ALS Biorepository has decided to take necessary precautions and temporarily stop in-home blood collections. However, you can continue to take the risk factor surveys. The surveys are voluntary, and by participating in the surveys, persons with ALS can provide researchers with information that may be used to improve our understanding of this disease.

If you would like to answer or submit any of these surveys, please log into your registry account here and click on the “Available Surveys” link.

Please remember to check for new surveys added since you last visited the Registry.


National ALS Registry Annual Meeting 2020 Update


The National ALS Registry has held its annual meeting since 2011. This meeting has been an important way for neurologists, researchers, advocacy groups, and especially patients and caregivers, to provide guidance and direction for the Registry’s initiatives.

Due to the current situation with COVID-19 nationally, as well as our commitment to protect the well-being and safety of our attendees, ATSDR has changed the format from an in-person meeting to a virtual event.

We have decided to consolidate the meeting to a single day: August 4th, 2020.

This is an invitation-only meeting; further details will be forthcoming.

May is National ALS Month


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ALS Registry Overview Fact Sheet Spanish

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