Rachel Richesson, PhD participated in a Topic Symposium titled “Standard Terminologies and Data Harmonization in Registries, Biorepositiories, and Rare Disease Research” at the Pediatric Academic Societies (PAS) Annual Meeting in Washington, DC on May 7, 2013. Her presentation, “Strategies to Harmonize Data Collection: A Perspective from the RDCRN Data Management & Coordinating Center,” was one of several that also included the following participants: Mary Purucker, National Center for Advancing Translational Schiences; Michale Kahn, University of Colorado; Stephen Groft, National Center for Accelerating Translational Sciences (NCATS); Chales Bailey, Chidres Hospital of Philadelphia; and Steven Hirschfeld, National Institute of Child Health and Development. The Symposium was jointly sponsored by the CTSA Corsortium Child Health Oversight Committee and the Pediatric Academic Societies.
Dr. Richesson shared the experience of the NIH-funded Rare Diseases Clinical Research Network and their approach to achieving standardized data collection. The network approach included governance, education, network engagement, and development of terminology servers to support the use of federally supported data standards.