Grant: Project Grant

Amyotrophic Lateral Sclerosis (ALS) is a rare and serious disease that affects the nerve cells responsible for muscle movement. Because ALS is uncommon and often progresses quickly, it can be difficult for researchers to find enough patients in a single location to study the disease effectively. This challenge is even greater in areas with limited access to neurologists or specialized health care. Patient registries-databases that collect information from people living with a rare disease-can help overcome this problem. ALS registries exist in many parts of the world, but the types of information they collect is not always widely shared or easy for researchers to find. This project aims to make better use of ALS registries by gathering and organizing information about what each registry collects and making this knowledge easily available to researchers. Our goals are to: identify ALS registries worldwide; compare the types of information they collect; and create a platform where researchers can see what information is available across registries, helping to support collaboration. To do this, we will review published studies and work together with leaders of ALS registries. We will share our findings on a free online platform open to researchers, patients, and caregivers. By making information about ALS registries easier to access, we hope to support more collaborative research, improve understanding of how information is collected around the world, and ultimately contribute to better knowledge and care for people living with ALS.