Genetic Testing Registry Launched

摘要

On Rare Disease Day, February 29, 2012, the National Institutes of Health announced the launch of the Genetic Testing Registry (GTR). Originally conceived several years ago as a mechanism to put "sunshine on the data" (Javitt et ah, 2010), it appears that the GTR is the beneficiary of the broad-based input it received from many stakeholders. Over the past few years, senior National Institutes of Health leadership, along with the crafters of this robust database at the National Center for Biotechnology Information (NCBI), explored such critical issues as the need for the registry, the structure of the database, and the potential ways laboratories could contribute. The result is a good one, both ambitious and cautious in potentially significant ways.