Studying a rare disease such as Fanconi anemia is challenging: data must be captured from as many treatment locations as possible. No single institution can have a breakthrough; it requires sharing as much data as possible from as many individuals as possible. Since 2015, Data for the Common Good (D4CG) has been building data commons based on the latest technological breakthroughs and leading international efforts to improve pediatric cancer and rare disease research through better data collection and storage. Through this grant funding, D4CG - in partnership with FARF and other worldwide stakeholders - will establish the world's first Fanconi anemia data commons by collecting data from registries in North America, Europe, and other parts of the world and harmonizing those data to a new international consensus standard, allowing the information to be combined and shared for research and discovery.
Researchers: Sam Volchenboum