Orphanet J Rare Dis 2021 Apr 7;16(1):161. Epub 2021 Apr 7.
Department of Medicine, Orphan Disease Center, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, 19104, USA.
Data silos are proliferating while research and development activity explode following genetic and immunological advances for many clinically described disorders with previously unknown etiologies. The latter event has inspired optimism in the patient, clinical, and research communities that disease-specific treatments are on the way. However, we fear the tendency of various stakeholders to balkanize databases in proprietary formats, driven by current economic and academic incentives, will inevitably fragment the expanding knowledge base and undermine current and future research efforts to develop much-needed treatments. Read More