National ALS Registry Update and Timeline

Thanks to the outreach of advocates across the country to secure $6 million in Congressional funding for the National ALS Registry in 2010, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is preparing to fully implement the National ALS Registry later this year.  In fact, every person with ALS in the country is expected to be able to self enroll in the registry this year via an online web portal and provide information that will help to advance the search for a cause, treatment and cure for ALS.
 
We have prepared an update that further details the progress that already has been made in creating the registry, including how the registry will identify cases of ALS, how people with ALS will be able to enroll in the registry and what all of us in the ALS community can do to ensure Congress continues to provide funding for this critical research project, which may become the single largest ALS research project ever created. The latest news on the Registry is available here.

The ALS Association is working with Congress to secure an additional $10 million for the registry next year.  If you would like to help make this funding for the registry a reality, please become an ALS Advocate today!   Sign up on our website and we will let you know when your advocacy is needed most - when outreach to your Members of Congress can have the biggest impact.   As an ALS Advocate, you also will receive the latest information about the registry, including when people with ALS can being enrolling.