Reimagining care and research for Amyotrophic Lateral Sclerosis

Reimagining care and research for Amyotrophic Lateral Sclerosis
JAMA Neurology; Suma Babu, MBBS, MPH; Joshua M. Sharfstein, MD; Eva L. Feldman, MD, PhD; 1/25
Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease involving progressive motor neuron degeneration. In 2022, US Congress and the National Institutes of Health (NIH) commissioned the National Academies of Science, Engineering and Medicine (NASEM) to identify priorities to make ALS a livable disease within a decade. After extensive deliberations and input from the public, researchers, and persons with lived experience, the committee released its report, Living With ALS. To accelerate progress in patient care and therapeutics, one of the report’s major recommendations was for the National Institute of Neurological Disorders and Stroke (NINDS) to fund a clinical trials network dedicated to ALS that is distributed across diverse geographic regions and integrated within a novel hub-and-spoke system of care and research for ALS. The hubs are ALS Centers of Excellence that provide patient care and research, both basic and clinical, while the spokes represent a large number of community and regional ALS clinics that provide care and link to hubs for research. By integrating ALS clinical trials within this structure, we have the potential to transform ALS care, drive innovation in ALS therapeutic development, and pave the way for breakthroughs in other neurodegenerative diseases.