Bethesda, MD

Dr. Yaffa Rubinstein is the Rare Disease Patient Registries and Bio-repositories Special Volunteer to the National Information Center of Health Services Research & Health Care Technology at the NLM/NIH.

Represented: Researchers

Yaffa R. Rubinstein served as the Director for patient resources for clinical and translational research at the National Center for Advancing Translational Sciences (NCATS)/National Institutes of Health (NIH), where she established directed the NIH/NCATS GRDR Program, a Global Rare Diseases Patient Registry Data Repository. She led the development of the GRDR common data elements (CDEs) and the model informed consent for participating in rare diseases patient registries. At NIH, she continue to be active member of the CDEs working group as well as disease-specific CDE working groups. She is also an active in 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, biospecimens and the importance of sharing data. She trained as a molecular biologist and received a PhD from the University of Maryland, College Park.

Rubenstein served as a member of the Advisory Panel on Rare Disease from Fall 2015 - Spring 2018.

Conflicts of Interest

As of March 5, 2014:

  • None reported


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