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Very helpful member
Jun 22, 2009
Lost a loved one
Just received this update from ALSA Advocacy!

House Votes to Increase ALS Registry Funding

Dear Kay Marie,

A few minutes ago, the House of Representatives passed legislation that will appropriate an additional $6 million for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This is a 20% increase over last year and demonstrates that Congress has made funding for the Registry a top priority - something that would not have happened without your efforts to contact Congress and tell them why more must be done in the fight against ALS.

The Senate is expected to vote on the bill as early as next week and we will keep you updated as the legislative process continues.

Registry Begins to Collect Data
As we reported earlier this year, the CDC is in the process of identifying ALS cases from throughout the United States utilizing data obtained from national databases, such as Medicare, Medicaid and the Veterans Administration. The Agency also has launched the first phase of the ALS Registry website, CDC - Amyotrophic Lateral Sclerosis. When fully launched in the second half of 2010, the site will enable people with ALS to self enroll in the registry.

However, the additional $6 million in funding provided by Congress not only will allow the CDC to continue its current efforts, but also potentially conduct more robust data collection at the state and local level in order to identify any cases that are not captured through the web portal and national databases.

For additional information about the National ALS Registry, including about the web portal and how people with ALS will be able to enroll in the registry, please click here.

Thank you to everyone who has contacted Congress and helped to make this victory possible!


Extremely helpful member
May 11, 2008
Los Angeles
Great news. I'm actually surprised Congress got anything done, but glad this was it!


Very helpful member
Jun 22, 2009
Lost a loved one
National ALS Registry Update
December, 2009
The ALS Association is the leading organization championing the establishment of a national
ALS patient registry that will identify cases of ALS in the United States and collect
information that will advance research into the cause, treatment and cure for Lou Gehrig’s
Disease. Significant progress has been achieved to date including the following:
Congress Enacts the ALS Registry Act, Appropriates $16 Million for ALS Registry
Thanks to the outreach of people with ALS and ALS Association advocates across the
country, The ALS Association has partnered with Congress to enact the ALS Registry Act
(Public Law 110‐373). Signed into law in October, 2008 the legislation provides the Centers
for Disease Control and Prevention (CDC) with the authorization and guidance necessary to
create a national ALS registry. At the same time, The Association has worked with Congress
to secure nearly $16 million in funding for the registry over the past five years (FY 2006‐ FY
2010), including $6 million in FY 2010 (pending enactment). This funding has enabled the
CDC to conduct four pilot projects to determine the most effective and efficient ways to
accurately identify ALS cases in the United States and to share information. It also has
enabled the Agency to take the first steps towards enrolling patients in the registry as
discussed below. Importantly, because The ALS Association pursued funding for the registry
even before enactment of the ALS Registry Act, the CDC will be able to implement the
National ALS Registry much sooner than otherwise would have been possible.
Creating the Registry: Pilot Project Results, Identifying Cases
Pilot Projects
Over a nearly three year period, the CDC sponsored four pilot projects in order to create the
building blocks for the registry. The pilots were conducted in Georgia, Minnesota, and South
Carolina and at the Kaiser Permanente HMO network. The projects evaluated several
different strategies to identify ALS cases, learning how to overcome the significant
challenges of effectively and efficiently ascertaining cases of ALS, a disease that progresses
rapidly, is not easily diagnosed and often is misdiagnosed or confused with other diseases
ranging from Primary Lateral Sclerosis to Parkinson’s disease to Lyme disease. The projects
also examined challenges associated with obtaining data, such as privacy and confidentiality
laws, regulations and policies, as well as the limitations of administrative databases and
medical records, which in addition to potentially including incorrect diagnoses also include
administrative errors in the coding of ALS cases. Preliminary results from the projects were
presented to the CDC in June 2009 and are guiding the next steps in creating the registry.
How to Identify ALS Cases: Medicare, Medicaid, VA
Using data learned from the projects, the CDC has created an algorithm that will enable the
Agency to accurately identify approximately 80‐85% of ALS cases in the United States by
examining large national administrative databases, such as those maintained by Medicare,
Medicaid and the Veterans Administration.
The effectiveness of these databases in identifying cases is relatively unique to ALS and is
made possible because of recent changes The Association has championed at Medicare,
Social Security and the VA. For example, because the 24‐month Medicare waiting period is
waived for people with ALS, many more PALS are enrolled in the program and therefore can
be identified through Medicare records. Similarly, regulations implemented by the VA in
2008 to make ALS a service connected disease also will significantly help to identify an
increasing number of cases through VA records.
Once an ALS case is identified via this method, it will be included in the National ALS
How to Identify ALS Cases: Web Portal, Self‐Registration
In order to identify the remaining 15‐20% of cases, the CDC is launching an on‐line web
portal that will allow people with ALS to self‐enroll in the registry via a secure website. The
first phase of the portal (CDC - Amyotrophic Lateral Sclerosis) was unveiled in October 2009 and currently
includes general information about ALS and answers to frequently asked questions. Self
registration is expected to begin in the second half of 2010 after the Agency has obtained
Institutional Review Board (IRB) approval and other necessary approvals that are required by
law to comply with privacy and data collection laws.
Once operational, the web portal will utilize a combination of strategies, including those
learned from the pilot projects, to verify true cases of ALS and to avoid duplication of
individuals already enrolled in the registry. The web portal ultimately is expected to allow
any person with ALS to access the site to enroll in the registry or confirm that they already
are enrolled.
As with other elements of the registry, The ALS Association is partnering with the CDC in the
design of the web portal. We have submitted formal comments, available here,, that also
include recommendations on how the web portal and the registry can provide PALS with
additional information about ALS research, including clinical trials, as well as how they may
obtain needed care, services and information. In addition, The Association is preparing to
actively assist PALS across the country in enrolling in the registry.
Enrolling in the Registry
Although self enrollment in the ALS registry has not yet begun, The ALS Association is
working with the CDC to ensure that as many people with ALS as possible enroll in the
registry once self enrollment is available. Therefore, we urge all PALS to sign‐up as ALS
Advocates via our website here: Public Policy - The ALS Association. By selecting ALS
Registry when signing‐ up, PALS will be notified as soon as the self enrollment phase of the
web portal becomes operational and they also will receive detailed instructions on how they
can enroll.
The ALS Association will provide additional information about the ALS registry as it becomes
available. If you have any questions, please contact us at [email protected]‐ or
toll‐free at 1‐877‐444‐ALSA.
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