Information from ALS foundation sites regarding the national registry act that was signed into law. There is mention of several pilot projects to determine the best way to implement collecting data in an efficient and productive way (wonder what these are and if there are any results yet):
http://www.alsa.org/policy/article.c...TOKEN=68144428

The ALS Association
National ALS Registry Efforts Underway
The ALS Association is pleased to announce that the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) has launched three pilot projects that will be used to guide the creation of a national ALS registry. The pilot projects, which are underway in Georgia, Minnesota and South Carolina, will examine the most effective and efficient ways to identify people with ALS and obtain and share data.

Since 2004, The ALS Association has pursued a comprehensive strategy to establish a national ALS registry. Significant progress has been achieved in this effort as Congress, the President and the CDC/ATSDR are collaborating with The Association and the ALS community to advance this important priority and to take the first tangible steps to evaluate the science of a national ALS registry.

http://webaz.alsa.org/site/DocServer...df?docID=51341

Congress Enacts the ALS Registry Act, Appropriates $10 Million for Registry Projects
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 $10 million in funding for the registry over the past four years (2006‐2009).
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. 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.