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Video
ELSIconversations: Responsible Stewardship: Establishing Standard Data Elements and a Community of Practice
In the final session, panelists lead the charge for establishing a community of practice that is best able to share experiences across programs. Topics include key data elements, reporting and…- community
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Publication
Returning value to the community through the All of Us Research Program Data Sandbox model
Journal of the American Medical Informatics Association -
News
Novel Gene Therapies for Pediatric and Young Adults with Sickle Cell Disease: Engaging Patient and Parent Stakeholders Working Group
Sickle Cell Disease (SCD) is an inherited disorder that results in premature mortality and severe morbidity in millions of afflicted individuals worldwide. Novel therapies are urgently needed and…- working group
- gene therapy
- Sickle Cell
- Stakeholder Engagement
- Spotlight
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Publication
Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research
Health Expectations -
Additional Resource
Workshop Proceedings, Public Engagement and Clinical Trials: New Models and Disruptive Technologies, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2012)
This National Academies Press publication summarizes the proceedings of a workshop that explored solutions to increase public engagement in the U.S. clinical trials enterprise. The workshop was…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Publication
Hearing community voices: Public engagement in Australian human embryo research policy, 2005-2007
New Genetics and SocietyDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Grant Abstract
Utility of Genomic Sequencing in Community Care Contexts
PROJECT NARRATIVE Families with children who have identified deficits in speech and/or sensory or musculoskeletal impairments without a known cause may be referred for genetic testing to find out…- Address
- Advisory Committees
- Area
- base
- Behavior
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Publication
Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya
BMC medical ethicsDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Trusted partners, community priorities, and data protections: Requirements for precision medicine research with Alaska Native peoples
Journal of Community Genetics -
Publication
Public involvement and engagement in big data research: Scoping review
Journal of Participatory Medicine