RaDaR Aims to Help Patient Groups Develop Rare Disease Registries

The NIH’s National Center for Advancing Translational Sciences has developed the Rare Diseases Registry Program, or RaDaR, to help patient advocacy groups create registries. “Our philosophy is that every rare disease should have a registry or natural history study. These registries need to be of good quality, and they need to be scalable,” said Dr. Anne Pariser of NCATS.