Search Results
For Patients and Families
The partnership engages communities on genomics, informs and shares perspectives, and impacts the focus of research.
… The Partnership for Community Outreach and Engagement in Genomics brings together community liaisons and health … inform and share perspectives, and impact the focus of research. … The Partnership for Community Outreach and …
AnVIL
The Data Use Oversight System (DUOS) is a semi-automated study registration and DAR management service informed by the GA4GH DUO standard, which enables the secondary use of human genomics and other controlled-access data in compliance with the informed consent of a study’s participants.
… access) are used in a manner that is consistent with the informed consent of the study’s participants. The growing demand for controlled-access datasets has spurred the development of …
Research Training
Institutional and individual funding from NHGRI to help scientists develop research and professional skills.
… NHGRI Training Mission: Prepare a diverse and talented genomics workforce that is operating at the forefront of … to improve human health. The National Human Genome Research Institute (NHGRI) provides both institutional and … to helpful resources: NHGRI Fellowships FAQ Resources for Trainees … The opportunities listed on this page are for …
Policy Issues
The GINA is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information.
… prohibit the use of genetic information to set premiums for health insurance. Finally, the bill would ban health … disclosing genetic information without an individual's consent. It is notable that this first version of the bill … , S. 1053 ). This same year marks a historical moment for genomics. On April 14th, 2003, the International Human Genome …
News Release
NHGRI published its “Strategic vision for improving human health at The Forefront of Genomics” in the journal Nature. This vision describes the most compelling research priorities and opportunities in human genomics for the coming decade, signaling a new era in genomics for the Institute and the field.
… 2020 Strategic Vision describes opportunities in human genomics for improving human health. … The National Human Genome … points to critical areas of data control, privacy and consent that the genomics community must improve in the …
Research Training
The Postdoctoral Intramural Research Training Award provides full-time, semi-independent research in NHGRI laboratories.
… The Postdoctoral Intramural Research Training Award (IRTA) is available to promising … Intramural Training Office, which serves as a focal point for training and career development and whose goal is to … career development programs. IRTAs are initially awarded for one to two years. These awards may be extended to a …
Research Funding
IGNITE enhances genomic medicine by supporting the development of methods for incorporating genomic information into clinical care.
… Findings from the genomics field have slowly started to find applications in … record (EMR) and provide clinical decision support (CDS) for implementation of appropriate interventions or clinical … Hospital Medical Center H. Lee Moffitt Cancer Center & Research Institute - DeBartolo Family Personalized Medicine …
Clinical Research
The study collects genetic and medical information from people with GNE myopathy to understand the symptoms and clinical course of GNE myopathy.
… from variants in a gene called GNE , which is responsible for a step in the production of a sugar called sialic acid. … has evidence of a diagnosis of GNE Myopathy and signs informed consent, you may all participate. Furthermore, we can …
News Release
An international team of researchers including NIH has completed the first comprehensive characterization of genomic diversity across sub-Saharan Africa.
… yet few studies have looked into genomic risk factors for disease in Africa. … The study provides clues to medical … scientific director of the NIH's National Human Genome Research Institute. "This is an important study that … approach is not always best when it comes to population genomics." The research team identified novel evidence of how …
News Release
On March 16, Rep. Louise M. Slaughter (D-N.Y.), lead author of the Genetic Information Nondiscrimination Act of 2008 (GINA), passed away at the age of 88.
… 2008 (GINA), passed away at the age of 88. … An Advocate for Genomics Rep. Slaughter was a strong advocate for genomics research, and her work on GINA helped to create protections …