National ALS Registry Identifies ALS Cases Nationwide; Online Enrollment Coming Soon

The ALS Association has led the fight to establish a National ALS Registry, partnering with Congress and the Centers for Disease Control and Prevention to secure funding and to build the registry.   We are excited to report that the National ALS Registry is operational and has begun to identify cases of ALS across the country, including those who have lost their lives to the disease.  In fact, thousands of cases already have been identified through existing national databases, such as those for Medicare, Medicaid and the Department of Veterans Affairs.  

However, this is just the initial phase of the Registry.  The Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (ATSDR) is now preparing to launch the National ALS Registry’s on-line web portal, which will enable all people with ALS across the country to self-enroll in the Registry.  The web portal is expected to “go live” later this year and will be available on the CDC’s ALS Registry website.  

The launch of the portal is the next phase in implementing the Registry.  Once fully implemented, the Registry will identify cases of ALS from across the country and collect data that is urgently needed to advance research into the causes of the disease and how it can be effectively treated.   Ultimately, the ALS Registry may become the single largest ALS research program ever created.  And it will mark the first time that data about ALS cases will be collected in such a comprehensive manner and on a nationwide scale.  

PALS Test ALS Registry Web Portal
At The ALS Association’s National ALS Advocacy Day and Public Policy Conference held in May, the ATSDR provided an update on the latest progress in implementing the Registry (Click here for the latest Registry Update).   The Agency also enlisted the help of several PALS attending the conference who tested a draft version of the online web portal.  PALS from Alabama, Maine, Mississippi, Nevada, and New Jersey provided feedback to the Agency on the ease of use of the portal, readability, layout and a number of other factors that will help to ensure that PALS and families can easily enroll in the Registry and that the Registry collects the vital information that will make it such a powerful research engine.

How Can PALS Enroll in the Registry?
To find out the latest information about the ALS Registry, including when PALS can begin to self-enroll, please sign-up to be an ALS Advocate via The Association’s website, here.   As an ALS Advocate, you will receive the most recent news about the ALS Registry.  And as the launch of the web portal approaches, The ALS Association also will provide detailed information about the Registry on our website, including answers to frequently asked questions, instructions on how PALS can enroll in the registry, flyers that can be shared at support groups, and other helpful information.     

We Still Need Your Help!
Although the Registry is almost fully operational, we still need your help!   That’s because Congressional funding is needed to continue enrollment in the Registry and to ensure the Registry provides vital information to researchers.   Thanks to your efforts, Congress already has provided $16 million over the past five years to design and launch the Registry.  But additional funding is needed and you can help by signing up to become an ALS Advocate.  By doing so, you will learn when your outreach to Congress can make the most difference.  And with your continued efforts, we can ensure that the Registry will fulfill the promise of helping to find the cause, treatment and cure for ALS.