October 20th, 2010
04:32 PM ET

National ALS registry launched

A division of the Department of Health and Human Services (HHS) is launching a voluntary national registry to better understand the characteristics of people who suffer from ALS or Lou Gehrig's disease.

ALS or Amyotrophic Lateral Sclerosis, affects an estimated 30,000 people in the United States- primarily older adults. The neurodegenerative disorder causes nerve cells to stop functioning and die. Consequences are dire: muscle weakness, paralysis and eventually death. What causes ALS  has not yet been identified.

"It ultimately may become the single largest ALS research project ever created. Never before has such a comprehensive effort been done on this scale to get a real clear picture of who gets the disease and why," said Patrick Wildman, director of Public Policy for the ALS Association.

The registry aims to collect information from a large number of individuals about heredity, possible environmental exposures, symptoms, military service and physical activity. The idea of such a database is not new.  Similar registries have been set up for  autism and Parkinson's disease. In 2007, we learned of the launch of the Interactive Autism Research (IAN), and the Michael J. Fox Foundation is
studying similar characteristics among patients with Parkinson's disease.

"We're really, really encouraging every person with ALS to enroll in the registry because at the end of the day, the registry's only as good as the data that gets into it," Wildman added.  "If we can get more people enrolled, the more opportunities we're going to have to use the registry to advance the fight for treatment and a cure."

soundoff (4 Responses)
  1. Constantine

    Hmmm – if you join then get insurance does that count as a pre-existing condition?

    October 21, 2010 at 00:23 | Report abuse | Reply
  2. Marty Murray

    While this is a good idea, in the end what will come out of it is a confirmation of already know facts, that als is a disease that develops when factors and patterns underlied by choices come together in a certain way.

    Nice that the work is being done. Still, als is already well understood by many and ways to solve it are have been available for some time.

    October 23, 2010 at 13:27 | Report abuse | Reply
  3. kevin

    For those ALS patients who are non-verbal there is a program with the state of TX that will fund a communication device. For more details; please email me for more information on how to obtain a device ad well as learn more about this fabulous program. Kevinh@hightechrehab.com

    October 23, 2010 at 14:46 | Report abuse | Reply
  4. shirley

    Please take a look at this video featuring NFL player Kevin Turner who has recently been diagnosed with ALS

    December 20, 2010 at 21:13 | Report abuse | Reply

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