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- 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.
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… 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 …
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 …
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 …
Event
The Advances in Genomic Technology Development meeting and Genome Technology Forum were hosted by the National Human Genome Research Institute (NHGRI) Technology Development Coordinating Center (TDCC) at The Jackson Laboratory in Farmington, CT from June 10-13, 2024.
… The Advances in Genomic Technology Development (AGTD) meeting was hosted by the National Human Genome Research Institute (NHGRI) Technology Development Coordinating Center (TDCC) at The … of the meeting was to provide grantees of the NHGRI Genome Technology Program an open forum to share and discuss key …
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., …
Event
NHGRI hosted the virtual Advanced Genomic Technology Development Meeting on May 27-29, 2020.
… Institute (NHGRI) hosted the virtual Advanced Genomic Technology Development Meeting, on May 27-29, 2020. The … The meeting will bring together NHGRI Genomic Technology Program grantees, other scientists, and engineers … to trainees. … Virtual … 2020 Advanced Genomic Technology Development Meeting … NHGRI hosted the virtual …
Event
NHGRI hosted the virtual Advanced Genomic Technology Development Meeting on May 25-27, 2021.
… Institute (NHGRI) hosted the virtual Advanced Genomic Technology Development Meeting, on May 25-27, 2021. The … The meeting will bring together NHGRI Genomic Technology Program grantees, other scientists, and engineers … set of participants. … Virtual … 2021 Advanced Genomic Technology Development Meeting … NHGRI hosted the virtual …