Table 1

Definition for FALS—a patient with ALS who has

i) One 1st degree relative with ALSii) Two or more 1st degree relatives with ALSiii) Either one 1st OR 2nd degree relative with ALSiv) Any relative with ALS, no matter how distantv) A positive gene test for a known ALS gene, but no family history
Q1. When you read a paper about FALS which does not give a definition, which definition do you assume the authors are using? All respondents (86)32.6% (28)12.8% (11)34.9% (30)15.1% (13)4.7% (4)
Q2. Please state if any of the following definitions match the definition that you use for FALS in your clinical practice? All respondents (82)29.3% (24)11.0% (9)37.8% (31)18.3% (15)3.7% (3)
European respondents (38)28.9% (11)5.3% (2)39.5% (15)26.3% (10)0% (0)
North American respondents (34)38.2% (13)11.8% (4)35.3% (12)8.8% (3)5.8% (2)
  • ALS, amyotrophic lateral sclerosis; FALS, familial amyotrophic lateral sclerosis.