Definition for FALS—a patient with ALS who has
| i) One 1st degree relative with ALS | ii) Two or more 1st degree relatives with ALS | iii) Either one 1st OR 2nd degree relative with ALS | iv) Any relative with ALS, no matter how distant | v) 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.