The ALS Association

ALS Ice Bucket Challenge Progress

National ALS Registry Efforts Underway

March 15, 2007

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.

In the following pages of this report, The Association provides the latest updates on this initiative, including:

The Association’s work with the Bush Administration and the President’s recent decision to include funding for a national ALS registry in his Fiscal Year 2008 Budget; 
Legislative efforts pursued by The ALS Association to generate Congressional support for the ALS Registry Act and to secure initial and continued funding for a national ALS registry; and
The Association’s partnership with the CDC/ATSDR.

With the expectation that the ALS community will be interested in joining together to help establish a national ALS registry, specific details about each of the pilot projects are listed in the “Building Blocks” section of this report. Additional details about The Association’s advocacy work with Congress and the Bush Administration also are outlined in the report.

The ALS Association welcomes this opportunity to continue to partner with the entire ALS community to advance ALS research through the development of a national ALS registry.  If you have any questions about this important effort, please contact one of the following individuals who are coordinating The Association’s efforts:

Lucie Bruijn, Science Director and Vice President (  
Steve Gibson, Vice President, Government Relations and Public Affairs (

ALS Registry Act

Through The Association’s partnership with Members of Congress, we have built tremendous support for the ALS Registry Act, legislation that would authorize $25 million to establish a national ALS registry overseen by the CDC/ATSDR. The legislation, which won the support of 215 U.S. Representatives and 50 Senators in 2006, is expected to be reintroduced in Congress soon.

However, because it can take years to create a fully-functioning registry (the World Trade Center Health Registry did not begin to collect data until two years after Congress authorized and appropriated funding to implement it), The Association also has pursued opportunities to fund the registry via the annual Congressional appropriations process, before Congress passes the authorizing legislation (the ALS Registry Act). Our goal is to obtain immediate funding to allow CDC/ATSDR to begin to create the building blocks for the registry as soon as possible. In this way, we can create the strongest possible foundation for the registry and help move this initiative forward much sooner than otherwise would be possible.

Congress and President Support Funding for a National ALS Registry

In 2005, The ALS Association successfully worked with Congress to direct nearly $1 million of existing CDC/ATSDR funds to begin pilot projects that will evaluate the science to guide the creation of a national ALS registry. President Bush has proposed to build on that progress by including funding for the registry in his FY 2008 Budget– the first time the President has included the registry in his annual budget, and a tremendous victory considering today’s fiscal climate and competing budget priorities.

CDC/ATSDR Establish “Building Blocks” for National ALS Registry

Over the past year, The ALS Association has been actively engaged with the CDC/ATSDR to develop pilot projects which will evaluate the science for a national ALS registry. CDC/ATSDR has launched three registry-related pilot projects, currently underway in Georgia, Minnesota and South Carolina. The goals of the projects are to:

Develop and test strategies to efficiently identify ALS patients; and
Determine effective ways to obtain and share data from existing sources, such as ALS Association Chapters, the Department of Veterans Affairs ALS Registry, ALS Association certified centers and ALS clinics, and the Centers for Medicare and Medicaid Services. 
It is estimated that these projects will take up to two years to complete. The results of the pilot projects and the information obtained will be used in evaluating the science to guide the creation of a national ALS registry.

Ongoing Pilot Projects

Goal 1 – Develop and test strategies to efficiently identify ALS patients

Project 1: Active case finding strategy on a state-wide level. Contract awarded to South Carolina Office of Research & Statistics: $246,000

Through a unique arrangement with over 40 public and private statewide partnerships, the Office of Research & Statistics, South Carolina Budget and Control Board has created a nationally-recognized, integrated, and dynamic person-level human services data system. Data points are included from all payer in-patient hospitalizations, out-patient surgery centers, emergency departments, home health and free clinics, vital records (births, deaths), State Health Plan, Department of Disabilities and Special Needs, and Elder Services (e.g., Meals on Wheels), as well as other sources. Medicare data are available through 2001. Additional years of Medicare data will be sought.

Using this unique database, individuals with ALS will be identified using ICD-CM-9 and ICD-10 codes. If available, specific procedures and prescription medication data will be used as well to select potential ALS patients who were not identified using ICD-CM-9 and ICD-10 codes. Once individuals are identified, medical records will be reviewed to confirm that the coding of diagnosis was correct. Information on the number of times a person was identified and from which datasets will be evaluated to determine the most efficient algorithm of identification. CDC/ATSDR will work with the local ALS Association Chapter and other ALS organizations to compare their mailing lists with the information obtained from the administrative database review. For years when Medicare data are available, a comparison will be made between the patients identified from Medicare with those from the other databases. This will evaluate the contribution of Medicare data to the algorithm and if some individuals would only be identified through Medicare.

Project 2: Active case-finding strategy in a defined geographic area.  Contract awarded to the Mayo Clinic, Rochester, MN: $178,000

The most recent study of trends of ALS incidence in Olmsted County, Minnesota covered the 1925-1998 time period. The Rochester Epidemiology Project (REP) is a unique medical records-linkage system for almost all sources of medical data for residents of Rochester and Olmstead County, Minnesota. This unique data allows for the study of the incidence of the natural history of diseases. Because of the unique medical records-linkage system, it is expected that all, with few exceptions, of the ALS patients in Rochester and Olmstead Counties would be identifiable. Again, CDC/ATSDR will work with the Mayo Clinic to compare those identified by the algorithm applied to existing database and those identified by the REP. Because of the increased awareness in the medical community of the importance of administrative and clinical records, the recording and reporting of diseases might be better than for other groups of providers. However, errors arise all along the path from medical record to final code in a database. This comparison allows for the identifications in errors that arise in the databases which are outside of the provider. If available, CDC/ATSDR will work with the local ALS Association Chapter and other ALS organizations to compare their mailing list with the information obtained from REP. Mailing lists are potentially a source for identifying individuals, however the accuracy of the data, that is patients vs. family members or interested parties, current mailing address, etc. has not been evaluated.

This project will also be used to evaluate strategies for identifying ALS patients such as ALS Association chapter data and national data (e.g., Medicare and Medicaid) against the “gold” standard of clinical records. 

Project 3: Active and passive case-finding strategy in an area with an ALS referral center. Contract awarded to Emory University: $307,000

The base population for this project is the residents of the State of Georgia. In order to have state-based information, Emory University will coordinate with other ALS referral centers in Georgia to identify ALS patients. Large national databases for the same area (e.g., Medicare, Medicaid, VA) will be used to identify ALS patients using the same ICD codes. Different algorithms to identify patients with ALS will be tested to determine the most effective one. To evaluate the accuracy of the coding and diagnosis, it will be necessary for case validation to abstract medical records and have the records reviewed by a neurologist to confirm the diagnosis for a sample of identified cases.

Goal 2 – Data sharing and acquisition

Project 1: $77,000 has been directed towards intramural activities related to data-sharing and acquisition. 

In February, 2007 CDC/ATSDR hosted a meeting in Atlanta to discuss issues related to data sharing, confidentiality and privacy. A number of interested stakeholders including The ALS Association attended and participated in the meeting.

Project 2: $52,000 has been directed towards the purchase of data from the Centers for Medicare and Medicaid Services

CDC/ATSDR has entered into an interagency agreement with the Centers for Medicare and Medicaid Services (CMS) to obtain Medicare and Medicaid ALS-related data needed to populate an ALS registry. CDC/ATSDR and the pilot project contractors will use this data as one of the national sources for ALS case identification. CDC/ATSDR has also obtained data from the Veterans Health Administration database.

ALS Community Involvement

The ALS Association and its partners in government are making tangible progress towards a national ALS registry. The first step is evaluating the science. As this science evolves, CDC/ATSDR will coordinate with the entire research community to ensure their involvement at this important phase of the registry’s development.

In the meantime, if you have any questions or would like to know how you can support the creation of a national ALS registry, please contact the following individuals with The ALS Association who are coordinating The Association’s efforts:

Lucie Bruijn, Science Director and Vice President (   
Steve Gibson, Vice President, Government Relations and Public Affairs (

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