Search Results
Facet (Page)
Refine Your Search
Audiences
Content Formats
Events
Sections
Divisions
Programs
- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program5
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
​
… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …
Research at NHGRI
The Technology Transfer Office is responsible for transferring NHGRI technologies to the private sector and exchanging research materials with outside groups.
… The Technology Transfer Office (TTO) at the National Human Genome … advice on copyright, intellectual property, and related technology transfer procedural and policy matters. … NHGRI Protocol Service Center NIH Office of Technology Transfer U.S. Patent and Trademark Office European …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … and the effects on healthcare systems, in using this information. The following research groups have been awarded …
News Release
Fearful patients who received information about the role of genomics in obesity were less likely to take steps to improve health habits
… … New research suggests that fearful patients who received information about the role of genomics in being overweight viewed the information as threatening and were less likely to take steps … impact, she wanted to determine how to communicate information about genomics and weight so that patients are …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… one million volunteer participants whose genetic information will be studied to help advance understanding … important that we provide participants with clear information about the issues relevant to genomic research … privacy and confidentiality. It also includes examples and information to guide researchers through the complex consent …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… careful explanation about how the participant’s genomic information will be used during and after the study, as well … challenging to convey. With advances in genome sequencing technology, increased data sharing and concerns around … that must be met during this process are: providing key information. confirming the participant understands the …
For Patients and Families
The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.
… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD)  was created in 2002 by the …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… remain about ethical, legal and social implications of the technology. People who are seriously ill may overestimate the … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … must authorize disclosure of individual health information, including individual research results.  It is … a specific circumstance, researchers should consider what information is important to convey to ensure respect for …
Event
The Advances in Genomic Technology Development (AGTD) 2022 Annual Meeting was hosted by the Technology Development Coordinating Center (TDCC) from July 12-14, 2022 at The Jackson Laboratory (Farmington, CT).
… Institute for Biological Studies 9:25 a.m. AVATAR: Novel Technology for Highly Parallel Analysis of Variation in … Sensors Omar Abudayyeh, Ph.D. Massachusetts Institute of Technology 1:15 p.m. Multiplex Genomic Recording of Enhancer … Panel Discussion 2:20 p.m. Coffee Break New Sequencing Technology Session Moderators: Sukanya Punthambaker, Ph.D., …