The ALS Patient CARE Program—North American Patient CARE Database

Evidence-based medicine has begun to make a major impact in the field of neurology and neuromuscular diseases. The American Academy of Neurology has published an extensive series of practice parameters to integrate evidence-based recommendations into patient management. The Cochran Collaboration, a global network of volunteers developing evidence-based systematic reviews, has completed a growing body of meta-analyses for therapies in neurology and neuromuscular disease. In the field of ALS, the first systematic review on riluzole was published five years ago and now there are 20 reviews either published or in preparation. One major shortcoming in the field of evidence-based medicine is the ability to track adherence to practice parameters and to examine the health outcomes resulting from those recommendations. In ALS, there have been efforts to track adherence to the practice parameters and evaluate outcomes, and to our knowledge these represent the first such efforts in neuromuscular diseases (1-4). As new therapies become available for patients with ALS, evidence-based recommendations are needed to provide optimal utilization of these new therapies.