Diversity and Inclusion in ALS Research throughout Greater New York

Amyotrophic lateral Sclerosis (ALS) is a neurological disease that results in the loss of nerve cells going to the muscle. There is an ongoing effort to discover good treatments that can slow the disease, and in some cases of people who inherit the disease, even stop the disease from developing. In recent years there has been a lot of progress with this effort, and we believe that recent discoveries will eventually lead to effective treatments. Only clinical trials will lead us to good treatments. For this effort to be fair, everyone with ALS should be able to access clinical trials. Currently, not everyone has access to our clinical trials at Columbia University, and we believe that there are specific bottlenecks that prevent some ALS patients from enrolling in clinical trials. We would like to address this problem to ensure that ALS patients from underserved communities including racially, ethnically, and genetically diverse individuals are represented in our research activities. We will work on removing specific barriers that prevent certain patients from coming to our center to enroll in clinical trials. The barriers include lack of awareness of clinical trials, not trusting the clinical trial process, and financial concerns. Our program will focus on educatimg physicians in the community as well as ensuring that patients referred for ALS treatment receive appropriate support.