Use of Genetic Testing in Amyotrophic Lateral Sclerosis by Neurologists

Use of Genetic Testing in Amyotrophic Lateral Sclerosis by Neurologists 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. We sought to understand in which situations genetic testing is used, which genes are tested for, and the attitudes of respondents toward genetic testing and counseling.