Clinical Research on Familial ALS

April 21, 2005

Investigators at the ALS Center at Emory Universityare 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 Universitytoll free at 888-413-9315.