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Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… How to Register Controlled-Access Studies   Study registration in dbGaP is required for large-scale human genomic studies, including those submitting data to AnVIL and studies with an Alternative Data Sharing Plan.   Follow the …
News Release
NHGRI hosts a Reddit "Ask Me Anything" about using virtual reality to study a host of questions about the human genome.
… diverse and underrepresented populations in genomics-based studies, a recent analysis found that individuals of European … hurdles of recruiting diverse participants in genomic studies, to the factors that play into creating diverse study … is important that when recruiting participants in genomic studies that you inform the prospective participant about the …
Healthcare Provider Genomics Education Resource
Genomics plays a role in every area of nursing, whether nurses are at the bedside providing one-on-one care, treating entire populations, teaching the next generation of nurses, or making discoveries in the lab.
For Patients and Families
​Clinical research is research conducted with human subjects, or material of human origin, in which the researcher directly interacts with human subjects.
… patients before they ever develop cancer. … All clinical studies are based on a set of rules or directions called a … approved by the FDA and marketed for public use. These studies continue testing the drug or treatment to collect … the experimental drug and who is in the control group. Studies are performed in this way so that neither the …
News Release
NIH researchers compared a new genetic animal model of Down syndrome to the standard model and found the updated version to be enhanced.
… standard for Down syndrome research, used in preclinical studies for nearly 30 years. Along with some successful …
News Release
A new method of targeting specific DNA sequences in zebrafish could accelerate the discovery of gene function and the identification of disease genes in humans.
… … A new role for zebrafish: larger scale gene function studies … A new method of targeting specific DNA sequences in …
Media Availability
The Cancer Genome Atlas identified molecular subtypes to help clinicians determine which tumors are more aggressive and which will respond to treatment.
Staff
Dr. Ebony Madden is the Health Equity and Workforce Diversity Program Director in the Training, Diversity and Health Equity Office at the National Human Genome Research Institute. ​
… from Howard University. Her research interests include population genomics, genomic medicine, complex disease and … plasma B12, B6, and folate levels in an ischemic stroke population from the vitamin intervention for stroke … Manolio, R. Luepker. Reporting genetic results in research studies: summary and recommendations of an NHLBI working …
Research Training
This program provides doctoral and medical graduates the opportunity to use genomic approaches to advance the growing area of health disparities research
News Release
By considering mixed genetic lineages, NHGRI researchers demonstrated that previously inferred links between a genomic variant that helps digest lactose and traits such as a person’s height and cholesterol level may not be valid.
… to inaccuracies. … Researchers have found that previous studies analyzing the genomes of people with European … reported inaccurate results by not fully accounting for population structure. By considering mixed genetic lineages, … with European ancestry should be re-evaluated. “By reading population genetics papers, we realized that the pattern of …