ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, January 27, 2011

And So We Wait

Questions submitted on CDC ALS Registry website:

Are you able to tell us how many patients have self-enrolled so far?

When is the earliest that we might know if the registry data challenge any of the prior assumptions about the incidence and prevalence of ALS in the U.S.?

Thank you very much.

Response:
Thank you for your interest in the National ALS Registry.

The Registry began allowing persons with ALS to self-register in October, 2010. Before any data can be released, ATSDR has to have at least 2 years of data in the Registry to be sure that the information is complete, accurate, and representative of all ALS cases in the U.S. Please check our website for updates on when data will become available.

If you need further assistance, please contact the Registry system administrator at ALSSystemAdmin@cdc.gov or call toll free at 1-877-442-9719 (9am-6pm ET).
Thank you,

The National ALS Registry Team

3 comments:

  1. It truly scares me that these bozos don't realize registrants or a good portion of them will be dead before they can figure out a way to publish status reports. I just found out that my CDC password expired without a "by your leave" and that sure should stimulate return visits by the otherwise undetermined number of registrant. I fear Senator Coburn's disdain for CDC may have some basis after all.

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  2. What happened to Transparency? Simply amazing that we live in the communication age, and still we have a "Failure To Communicate".

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  3. Wow! This subject sure has fallen with a huge thud amongst the ALS community. Are we getting the action we deserve from our silence.

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