Resource Explorer

This is an NIH provided list of patient registries. A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Many registries collect information about people who have a specific disease or condition, while others seek participants of varying health status who may be willing to participate in research about a particular disease. Individuals provide information about themselves to these registries on a voluntary basis. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or private company. It is always good to check first to know who sponsors the registry or look for information on a registry's site to know about their sponsor(s).