Survey for PALS, CALS, and CALS of deceased PALS.

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sadiemae

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09/2009
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Take 30 minutes to check this out! Halfway down the page under "Newsflash" there are links to take the survey!

http://www.alsworldwide.org/


ALS WORLDWIDE is conducting a comprehensive survey as part of a two-year research study of the origins and pathogeneses of Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease).

Every reader can participate by spending the 20 to 30 minutes it will take to complete one of the following questionnaires through Survey Methods:
An ALS patient can complete the ALS PATIENT SURVEY
A close relative or caregiver can complete the ALS DECEASED PATIENT SURVEY
Anyone from the general public, including medical professionals, can complete the GENERAL SURVEY (control group).
Through the information obtained, we will create an extensive database and interactive online map that will identify all suspected or reported clusters, patterns and hotspots of the disease around the world.
 
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We did this today and posted it on our Facebook page. It really only takes about 20 to 30 mins to do.
 
Thanks for the link, Lori!

FYI: It's really important that this be filled out while you can still communicate with your pALS, if you are a cALS inputting the info. I had trouble answering some of the questions thoroughly, as I had no one to consult with for the answer. :(

Thanks again!
 
Thanks so much Lori! We have been trying to get someone (MDA, CDC, anyone!) to look into the cluster here in Memphis. This makes us feel like we are stepping in the right direction! I sent it to a number of CALS last night as well as the ALSA coordinator.

You are so good about keeping an eye out for forward movement. Thank you!
 
Thanks for posting Lori! I passed it on to my ALS Clinic and Clinical Trial Coordinator in Augusta.
 
Did it! Hope they find something!
 
CJ I agree... when designing the "deceased PALS" survey there really needed to be an "I have no fricking clue" option on a couple of those questions, and I knew Glen as far back as high school...
 
Posted on the Augusta ALS fb page
 
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