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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 … study registration and DAR management service informed by the GA4GH DUO standard , which enables the … and other controlled-access data in compliance with the informed consent of a study’s participants. …
Secondary Genomics Findings Service
Responsibilities as a PI, consent, type of data accepted, and how to apply
… Provide staff who are adequately trained to perform the informed consent for secondary findings and who can enter CRIS orders. … some suggested language to incorporate into protocols and consent forms. As with all parts of your consent form, it is crucial you talk with your participants …
Event
Pre-Application Webinar for the NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-space Clinical Resource (ACR) (U24 Clinical Trial Not Allowed) Funding Opportunity Announcement
… Visualization, and Informatics Lab-space Clinical Resource (ACR) (U24 Clinical Trial Not Allowed)   … Visualization, and Informatics Lab-space Clinical Resource (ACR) (U24 Clinical Trial Not Allowed) … Opportunity Announcement (FOA) for the AnVIL Clinical Resource (ACR)  RFA-HG-22-021 . The ACR FOA is to support the …
News Release
The Genetics/Genomics Competency Center now includes a new section on pharmacogenetics and pharmacogenomics.
… a variety of resources on the topic." To access this resource, go to genomicseducation.net . Consistent with … A Resource for Pharmacists, By Pharmacists …
Event
To bring together communities of researchers working in machine learning (ML), NHGRI hosted the Machine Learning in Genomics: Tools, Resources, Clinical Applications and Ethics workshop on April 13-14, 2021.
… Ph.D. , University of Wisconsin Session 3: Data and resource needs for machine learning in genomics Moderators: …
News Release
Most pregnant women want recommendations from their doctors when deciding which information to receive from prenatal whole genome sequencing.
Event
On Tuesday, December 17, 2024, ASHG and NHGRI co-host an informational webinar about Post-Baccalaureate Genomics Analyst Fellowship program for potential applications.
News Release
NIH will award $38.5 million over five years to the Developmental Genotype-Tissue Expression (dGTEx) project, which aims to build a widely available resource of human developmental gene expression in a multitude of tissues for use in basic and clinical research.
… over 900 adult postmortem donors. It also established a resource for researchers to explore gene expression in many … with genomic diseases. To work toward completing the resource, NIH will award $38.5 million over five years to the … centers will also oversee and manage the project.  “The resource created by the dGTEx project could have huge …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… In early 2020, NHGRI will require explicit consent for future research use and broad data sharing of all … who need to use human samples that lack explicit consent may submit an exception request with a brief … Explicit consent:  Explicit consent is a clear, affirmative response …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… data to use data generated from sources with participant consent for unrestricted access or for General Research Uses through controlled access. Similarly, consent language should avoid restrictions on the types of … In addition, individual participants who do not consent to future use or broad data sharing may still …