September 26, 2014
With today’s progress in gathering rare disease information into patient registries, biobanks and other clinical databases comes the challenge of connecting these data sources to conduct rational genetic, diagnostic and therapeutic research. In an article published in the Journal of General Internal Medicine, Thompson et al. describe the role of RD-Connect as an EU-funded platform to integrate and cross-link data sources in a comprehensive, yet secure mode.
Since its launch in January 2013, in association with partner projects Neuromics, EURenOMICS and SUPPORT-IRDiRC, RD-Connect has begun identifying rare disease biobanks, developing tools to merge and search data, and developing regulatory and ethical standards to optimize data sharing and ensure patient confidentiality. By drawing on and incorporating resources from twenty-seven associated institutions, RD-Connect will contribute towards IRDiRC’s goals to develop diagnostic tools and new therapies for rare diseases.