Charting rare stars

A databank constructed by the National Organization for Rare Disorders and the VHL Alliance could serve as a model for how patient organizations can generate natural history data to help speed development and FDA review of new treatments.

The Cancer in Our Genes International Patient (CGIP) Databank was formally unveiled in May and discussed at NORD's Rare Diseases and Orphan Products Breakthrough Summit held Oct. 21-22. CGIP is the first public launch from a NORD platform designed to help patient organizations manage their own registries as a vehicle for natural history studies and other research...