Dr. Paul Mehta, M.D. was with Reshma Punjani and spoke about the national Amyotrophic Lateral Sclerosis registry and invited all amyotrophic lateral sclerosis patients to join. Their web site is here:

National Amyotrophic Lateral Sclerosis (ALS) Registry
National Amyotrophic Lateral Sclerosis (ALS) Registry - Home

I established an account early in the development of this web site but have not used the account . . . at the time the amount of data they possessed was limited; I will be reconsidering their data soon.