RARECast: Building an International Registry for Rare Diseases

David Pearce created the Coordination of Rare Diseases at Sanford or” CoRDS” registry as a national resource that could help accelerate research into rare diseases. We spoke to Pearce, President of Sanford Research, Director of Sanford Children’s Health Research Center, and the Global Genes 2012 Champions of Hope Honoree for Research & Science, about his own research into the neurodegenerative disorder Batten Disease, how that led to the development of CoRDS, and the role patient registries can play in accelerating rare disease research and the development of new therapies.

This is an encore presentation of our earlier interview with Pearce.

Daniel S. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013 to provide strategic communications to life sciences companies. He is host of The Bio Report and RARECast podcasts, a senior fellow at the Center for Medicine in the Public Interest, and a member of the advisory board of the California Biotechnology Council.