The CORDS (Collaborative Online Rare Disease Study) is a crucial tool for advancing the understanding of Alström Syndrome by creating a comprehensive global patient registry. By participating, individuals contribute valuable health information through secure questionnaires, which helps link data with researchers and clinicians worldwide. This collaborative effort enhances global knowledge, supports the development of new treatments, and ensures that researchers access relevant information while maintaining privacy and confidentiality. 

http://www.alstrom.org.uk/patient-registry/#1580232127388-37e63097-4aaf