We are in the middle of a data revolution that promises to rapidly advance rare disease research. When data is gathered globally and multiple types of data are combined, opportunities to learn about and ultimately solve rare diseases are created. However, those opportunities are limited without ensuring data are open to study by all researchers. It is becoming more clear that sharing is often maximized when data is controlled by rare disease organizations, while creating responsible ways for doing so. Learn the advantages and practical strategies for collecting, sharing and maintaining data to advance rare disease research and treatment.
Speaker: Daniel MacArthur, PhD, Assistant Professor, Harvard Medical School and Massachusetts General Hospital, and Co-Director of Medical and Population Genetics, Broad Institute of MIT and Harvard and Center for Mendelian Genomics
Speaker: John Wilbanks, Chief Commons Officer, SAGE Bionetworks
Speaker: Jennifer Thornton, MSW, Executive Director, Children’s A-T Project
Day 1, Track 3