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Research Letter
January 2017

Use of Genetic Testing in Amyotrophic Lateral Sclerosis by Neurologists

Author Affiliations
  • 1Neuromuscular Diseases Research Section, Laboratory of Neurogenetics, National Institute on Aging, National Institutes of Health, Bethesda, Maryland
  • 2The Northeast ALS Consortium, Boston, Massachusetts
  • 3’Rita Levi Montalcini’ Department of Neuroscience, University of Torino, Turin, Italy
JAMA Neurol. 2017;74(1):125-126. doi:10.1001/jamaneurol.2016.4540

There have been a number of publications describing the important role of genetic counseling in amyotrophic lateral sclerosis (ALS).1,2 While such attempts at guiding who should undergo genetic testing are welcome, they are put forth in a vacuum because there are no data on where ALS neurologists stand in terms of genetic testing and counseling for the disease, and in terms of what is considered to be familial and sporadic ALS.3 We attempted to fill this gap by surveying members of the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS, http://www.alsconsortium.org), one of the largest clinical research organizations for ALS.

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