From the Agency for Toxic Substances and Disease Registry. This chart diagrams how the National ALS Registry will identify cases of ALS across the country utilizing national databases, like those at Medicare and the Veterans Administration, and the self-enrollment web portal.
The Agency for Toxic Substance and Disease Registry (ATSDR) has published several items your Chapter can use to promote the National ALS Registry. We encourage you to make these materials widely available including at: the Chapter office; Centers of Excellence and Clinics; support group meetings; home visits; walks and walk kickoffs; and other Chapter events that people with ALS and their families, caregivers, and friends may attend. In addition, please include materials as part of the packets you provide to new patients.
You may order the items listed below, free of charge, directly from the National ALS Registry website. To order items, visit http://wwwn.cdc.gov/ALS/ALSOrderRegistryMaterials.aspx. If you are an ALS Association Chapter or other organization and would like to order materials in bulk, please contact The ALS Association’s Public Policy Department at advocacy@alsa-national.org.
The Fact Sheet has general information about the registry and includes information on how the registry works, where to enroll and how the registry benefits those with ALS. This flyer is the most frequently used handout and we recommend Chapters make it available as broadly as possible.
The Patient Guide is a tri-fold pamphlet that, like the Fact Sheet, provides general information to persons with ALS and their families to understand the basics of the registry. It includes information regarding where patients can enroll in the registry, how their information will be protected and contact information for the National ALS Registry. As with the Fact Sheet, Chapters can make this guide widely available.
This is a “how-to” guide to help people with ALS enroll in the National ALS Registry. The guide provides step-by-step instructions for going to the registry’s website and completing the enrollment process. This guide should be used by persons with ALS, Chapter staff, and others who may assist people with enrolling in the registry. The guide can also be used to help previously enrolled patients log into their account to complete additional surveys.
This poster provides a quick introduction to the National ALS Registry. It highlights the purpose of the registry and provides contact information. This poster should be used for general awareness and outreach for the registry and can be displayed in the Chapter office, at Centers and Clinics and other locations where it can be seen by persons with ALS, families and caregivers.
This is a general information brochure for health care professionals working with persons with ALS. This guide explains the goals for the registry, resources for patients, and contact information for ATSDR. This brochure should be used to introduce physicians, researchers, and other health professionals to the registry to help explain its purpose.
This flyer explains the Continuing Education Module available through ATSDR’s website. Health care professionals can earn 1.5 hours of continuing education credit necessary for their professional development. This flyer should be shared with health care professionals who see persons with ALS.
This two page guide is designed for researchers who wish to share information about approved research projects, including clinical trials, with people with ALS who are enrolled in the National ALS Registry.
