U.S. National ALS Registry Administered by the CDC

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rknt50a

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Joined
Aug 14, 2006
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215
Reason
Lost a loved one
Diagnosis
09/1996
Country
US
State
IN
City
IN
This is PALS who may be new here.

Please be sure to self-enroll in the U.S. National ALS Registry.

This is extremely important. It is the central registry for ALS cases in the U.S. Physicians do not report cases of ALS to the government the way they do cancers and some other diseases. ALS advocates worked for a number of years to get the ALS Registry Act passed into law in 2008 and this is a true epidemiological study of cases of ALS and where they are located. Please make sure that your case is counted. Please participate in the CDC's supplemental surveys.

Today I received a solicitation from an ALS 501c3 with a survey that they are running. I am concerned that survey might confuse the issue of the importance of patients self-enrolling in the official U.S. National Registry.

I can be a big critic of the slowness and expense of the U.S. National ALS Registry, but at the end of the day, it is our best shot at getting epidemiologically sound data. Please self-enroll at http://www.cdc.gov/als .

Thank you.
 
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