From The ALS Association:

Investigators at the ALS Center at Emory University are investigating the
possibility of designing a clinical trial for persons at risk for familial
(inherited) ALS. Since this is a rare disease, the researchers indicate
that their first step is to determine the number of persons who might be
eligible for such a study, and whether these people might be willing to
participate in the study.

The research team is searching for families where two or more family
members have or had a diagnosis of ALS. Dr. Jonathan Glass, the principal
investigator of the research, tells ALSA that they are particularly
interested in identifying healthy members of these families that may be at
risk for developing ALS. The initial contact will consist of a telephone
conversation, lasting 10 to 20 minutes, during which investigators will
ask questions about the individual’s health and the family history. Those
persons at risk will be questioned as to their potential interest in
participating in a clinical trial aimed at preventing or delaying the
onset of disease.

The researchers indicate that, based on the initial telephone
conversations described above, a second study may follow that would
include a treatment trial to evaluate compounds intended to prevent or
delay the onset of ALS in at-risk individuals.

If you believe you have familial ALS or may be at risk for familial ALS
(two or more family members with ALS), and you are interested in learning
more about this study, please call The ALS Center at Emory University toll
free at 888-413-9315.