611Testing Registry (GTR ) as a source of information for healthcare providers and
patients about tests and laboratories, and for researchers and regulators to watch the
genetic testing industry. GTR includes information about how the tests are used,
about their validity and utility, and about how they are accessed. The database,
developed by the National Center for Biotechnology Information, is overseen by
the NIH’s Offi ce of the Director.
National Human Genome Research Institute
As part of its plans to help translate human genomic research discoveries from the
lab into clinical care, the National Human Genome Research Institute (NHGRI)
awarded up to $12.8 million to fund new projects to address the challenges that
these medical innovations face and the ones they pose. These four 4-year grants,
totaling $2.6 million 2013, will fund three research projects that tackle certain prob-
lems and questions about the use of genomic information in the clinic and a coordi-
nating center that will help support and organize these projects so that they function
as a consortium. The institutions receiving funding include Duke University, the
University of Florida, the Icahn School of Medicine at Mount Sinai, and the
University of Pennsylvania. As many groups in the US have been studying new
ways to take genomic results and implement them into electronic medical records
and clinical care, NHGRI is still learning the best ways to do this and putting
together a funded consortium of investigators that enables networking to develop
best practices and disseminate information.
National Institute of General Medical Sciences
In 2008, the National Institute of General Medical Sciences (NIGMS) released a
strategic plan that outlines its goals over the next 5 years, including an emphasis on
continued support for its large-scale research programs such as the Pharmacogenetics
Research Network (PGRN), the National Centers for Systems Biology, the Protein
Structure Initiative, and the Models of Infectious Disease Agents Study.
PGRN is a group of 12 independently-funded interactive research groups, each
with its own focus in an identifi ed area of pharmacogenomic research. The goal of this
network is to build a knowledge base of data on how variation in human genes relate
to drug responses – Pharmacogenomics Knowledge Base (PharmGKB). It contains
both raw and curated information and presents data and information accumulated in
the fi eld and contributed by researchers both within and beyond the network.
NIGMS also supports the Electronic Medical Records and Genomics Network
(eMERGE), which is a national consortium formed to develop, disseminate, and
apply approaches to research that combine DNA biorepositories with electronic
medical record (EMR) systems for large-scale, high-throughput genetic research
(see section on electronic medical records).
NIGMS’ “Investing in Discovery” plan is aimed at guiding the initiatives over
the next 5 years, and how it will make strategic investments to maximize the benefi ts
Role of the US Government and Agencies in Personalized Medicine