Patient registries can also collect feedback from the patients regarding a new treatment and gather information on the numbers of patients and the medical interventions they require, which helps the healthcare systems adjust to their needs.
Currently, registries exist for a small fraction of rare diseases and, conversely, more than one registry exists for certain rare diseases. Thus, calls are increasing both for the expanded use of registries and for a more systematic and standardized approach to their creation, maintenance, and accessibility on an international and global basis.
To help researchers find registries holding data on the rare disease of interest, RD-Connect has created the Registry & Biobank Finder - a world-wide directory or rare disease patient registries and biobanks. The system helps create new registries as well as link the existing ones.