Yaffa Rubinstein
National Institutes of Health, USA
Biography
Yaffa R. Rubinstein is Program Director at the Office for Rare Diseases Research/National Center for Advancing Translational Sciences (NCATS)/National Institutes of Health (NIH), where she directs the NIH/NCATS GRDRSM Program, a Global Rare Diseases Patient Registry Data Repository, and the RD-HUB, a database for biorepositories and biospecimens, she led the development of the registry’s common data elements (CDEs) and the model informed consent for participating in patient registries. At NIH, she is an active member of the CDEs working group as well as disease-specific CDE working groups. She is also an active member of the European rare disease initiative, RD-Connect/IRDiRC, and a passionate supporter of rare disease patient advocacy groups and their families, providing them with assistance and information about patient registries and the importance of sharing data and biospecimens. She trained as a molecular biologist and received a PhD from the University of Maryland, College Park.
Abstract
Abstract : Interoperability of bio-repositories data and patient registries data: The rare disease prospective