LBSL, a rare genetic disorder that affects the brain and spinal cord, was first identified in 2004. While there are no treatments available today, researchers are working to understand the condition and develop therapies. One ongoing study at Kennedy Krieger Institute is using digital health technologies to remotely test people with the condition and provide a roadmap towards a therapy. We spoke to Ali Fatemi, director of the Moser Center for Leukodystrophies at the Kennedy Krieger Institute, about the study, his use of digital health technologies, and their potential to transform the way researchers conduct clinical trials.