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Developing a community|led rare disease ELSI research agenda.


Developing a community-led rare disease ELSI research agenda

Through capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future ...

Developing a community-led rare disease ELSI research agenda

We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families ...

Developing a Community-Led Rare Disease ELSI Research Agenda

Dr Jeremy Garrett (Host): Hello and welcome to another episode of the Pediatric Ethics Podcast, sponsored by the Children's Mercy. Bioethics Center.

Developing a community-led rare disease ELSI research agenda

Developing a community-led rare disease ELSI research agenda ... Disclaimer: Publications may either be freely available or require a fee to view (or access) on ...

(PDF) Developing a community-led rare disease ELSI research ...

Conclusions Through capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare ...

Developing a Community-Led Rare Disease ELSI Research Agenda

Developing a Community-Led Rare Disease ELSI Research Agenda · Authors. Jeremy R. · Files. Download Transcript, Episode 40 (98 KB) · Document Type.

Developing a community-led rare disease ELSI research agenda ...

Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be ...

Developing a community-led rare disease ELSI research agenda ...

... community members as equal partners in developing a research agenda for ELSI in rare disease. We established “Rare Voices” (RV), a 22-member stakeholder ...

Additional file 1 of Developing a community-led rare disease ELSI ...

Additional file 1 of Developing a community-led rare disease ELSI research agenda.

Developing a Community-Led Rare Disease ELSI Research ...

Developing a Community-Led Rare Disease ELSI Research Agenda Pediatric Ethics Podcast ... In this episode, Dr. Jeremy Garrett is joined by Courtney Berrios and ...

Developing a Community-Led Rare Disease ELSI Research Agenda

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Ethical, legal, and social issues (ELSI) in rare diseases

Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may ...

ELSI Research Areas and Sample Topics

Effects of increasing genomic knowledge on how wellness, health and disease are defined by patients, caregivers, healthcare providers and the ...

(PDF) Ethical, legal, and social issues (ELSI) in rare diseases

Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining ...

Community Engagement in Genomic Research - ELSIhub

Engaging with communities in biomedical and genomic research is increasingly seen as critical for navigating ethical considerations, ...

Developing a Community-Led Rare Disease ELSI Research ... - IMDb

Developing a Community-Led Rare Disease ELSI Research Agenda (Podcast Episode 2024) Parents Guide and Certifications from around the world.

Ethical, legal, and social issues (ELSI) in rare diseases - OUCI

Developing a community-led rare disease ELSI research agenda. Courtney Berrios, Macy McBeth, Andrea Bradley-Ewing, Nikolaus Schuetz, Annette Campbell, Zohreh ...

OUCI

Developing a community-led rare disease ELSI research agenda. Courtney Berrios, Macy McBeth, Andrea Bradley-Ewing, Nikolaus Schuetz, Annette Campbell, Zohreh ...

ELSIcon2022 Paper: Toward an anthropology of rare disease

Addressing the many challenges faced by rare disease patients and families will require tackling both new and longstanding questions including: ...

ELSI: Participating NIH ICs

Research projects may develop tools and findings that can be applied across many diseases and conditions. Projects focused on a single disease ...