ALS Registry FAQs

by Margaret Wahl on Sat, 2009-10-10 14:34

Questions and answers about ALS and the upcoming National ALS Registry have been posted online

The federal government has released preliminary details about the new National ALS Registry, which will be launched in late 2010. A list of frequently asked questions (FAQs) about ALS and the registry can be viewed online at    

The FAQs were published by the Agency for Toxic Substances and Disease Registry, a public health agency associated with the Centers for Disease Control and Prevention.

The National ALS Registry was funded by the federal government in 2008, following passage of the ALS Registry Act. It will scientifically collect, manage and analyze information about people with ALS to help researchers better understand the disease.

The FAQs cover ALS, the National ALS Registry, the federal agencies involved with the registry and how the registry will advance the fight against ALS. Registry data will be used to estimate the incidence and prevalence of ALS, promote a better understanding of how the disease develops and provide data to researchers about improving disease management and developing better standards of care.

“We’re hopeful that all of the people and families affected by ALS will get involved so we obtain the largest database possible,” said Valerie Cwik, MDA Medical Director and Executive Vice President for Research. “This is a formidable disease, but science will eventually identify its causes.”

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