CDC/ATSDR Launch National ALS Registry Website

[indigosd]

I copied and pasted this from my email from ALSA Advocacy! Woo Hoo!!




Today, October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is launching the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. The website is available at CDC - Amyotrophic Lateral Sclerosis. The ALS Association also will host a link to the Registry website on our homepage at Welcome - The ALS Association.

In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families.

In the next phase, the website will enable people with ALS to enroll in the registry. However, before that can happen, ATSDR must first obtain an Institutional Review Board (IRB) approval and other approvals required by law to ensure that personal information collected by the registry is kept private and protected from misuse. This process already is underway and The ALS Association will assist in any way we can to secure the necessary approvals in order to speed enrollment in the registry.

Enrolling in the Registry
As ATSDR pursues the approvals necessary for the next phase, we are partnering with the Agency to keep the ALS community informed and we will notify PALS as soon as they can self-enroll via the ALS Registry website. If you would like to receive this notice, please visit The ALS Association's website at Public Policy - The ALS Association and sign-up to be an ALS Advocate. Please select ALS Registry when signing- up. This is especially important because, due to privacy rules, PALS will not be able to request that ATSDR notify them about the status of the registry, including when they can begin to enroll.

If you have any questions about this update, please contact The ALS Association at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

Thank you

[Big Mike]

I'm looking forward to signing up with the Registry

[GlenBrittle]

cut & paste from wwwn dot cdc dot gov/als/ALSFAQ.aspx

The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States. Many other registries limit who can take part based on certain issues such as which doctor they used or their service in the military. For this registry, it is important to include everyone who has ALS to get more accurate information about the disease. In addition, this registry will allow participants to provide additional information about possible risk factors for ALS by completing surveys on the Web at their convenience.

What a hypocrisy . It is important to include everyone who are citizens or residents of United States.

[BethU]

Glen, if this registry included even one US non-citizen, Lou Dobbs and the wingnuts would be gunning down every member of Congress!

It should be possible to take the information asked for in the survey and start a grassroots survey in Canada and elsewhere and maybe light a fire under other governments. We REALLY need data from around the world!