Search Results
For Patients and Families
The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.
… (GARD)  was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases … a genetic or rare disease and who need information for their research have contacted GARD, as have people who … Community leaders looking to help people find resources for those with genetic or rare diseases and advocacy groups …
Educational Resources
Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between populations from different geographical regions.
… … Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between … … Ancestry-informative markers are sets of polymorphisms for a particular DNA sequence that appear in substantially … … Ancestry-informative markers are sets of polymorphisms for a DNA sequence found in different frequencies between …
Research Funding
A list of funding opportunities in genomics research provided by NHGRI and the National Institutes of Health.
… The National Human Genome Research Institute supports research and training and career … developing new technologies, and studying the impact of genomics on society. … To apprise the community of research … publishes funding opportunities in the NIH Guide for Grants and Contracts . For your convenience, we have also …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… This raises the question of when and how it is appropriate for the scientists to look for and share such research … researchers believe that at a minimum and after an informed consent process, incidental findings that are medically …
Research Training
An opportunity for students to receive individualized research mentoring, learn about careers in genomics and have access to a network of early-career genome scientists.
… “The promise of genomics cannot be fully achieved without successfully … M.D., Ph.D., NHGRI Director … The National Human Genome Research Institute (NHGRI) Division of Intramural Research is … clinicians in this domain.  The Immersive Summer Program for Research in Genomics (iSPRinG) aims to build and sustain …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic … … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
News Release
NIH grants aim to gauge if genomics can be used to help diagnose diabetes, manage heart disease and guide cancer clinicians to the most effective drugs.
… National Institutes of Health (NIH) grants aim to gauge if genomics can be used to help diagnose diabetes, keep heart … (IGNITE) program administered by the National Human Genome Research Institute (NHGRI), part of NIH. All three projects … in broader, community-based medical settings must happen for genomic medicine to eventually gain wider use." The …
News Release
Most pregnant women want recommendations from their doctors when deciding which information to receive from prenatal whole genome sequencing.
… The study, by researchers at NIH's National Human Genome Research Institute (NHGRI) and the NIH Clinical Center, was … them prepare emotionally, psychologically and financially for post-birth challenges. Women with higher genomic literacy … is the ability to understand and use genomic information for health-related decisions. Some women didn't want certain …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… of genomics research and technologies, assess policy needs for the field, and develop policy positions on issues arising … … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… Register Aug. 26, 2014 and published in the NIH Guide for Grants and Contracts Aug. 27, 2014. … Starting with … available only for research purposes consistent with the consent provided by participants in the original study. Under … GDS policy is the expectation that researchers obtain the informed consent of study participants for the potential …