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

Developing a community-led rare disease ELSI research agenda

... rare disease including “rare,” “genetic,” and/or “complex health concerns” (see Additional file 1 for word cloud used in recruitment materials).

Developing a community-led rare disease ELSI research agenda

Affiliations. 1 Genomic Medicine Center, Children's Mercy Kansas City, Kansas City, MO, USA. [email protected].

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

posted on 2024-01-22, 21:20 authored by Courtney Berrios, Macy McBeth, Andrea Bradley-Ewing, Nikolaus Schuetz, Annette Campbell, Zohreh Talebizadeh, ...

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

Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established ...

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 ...

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

At the same time, the expectations, concerns, attitudes, and priorities of the rare disease community do not overlap entirely with those present in other ...

ELSI-related presentations at ASHG 2022

PB2193. 3:00PM-4:45PM PT. Caroline Lumpkins. Shared in Rare: Engaging stakeholders to develop a shared ELSI research agenda across rare diseases.

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

... Developing a community-led rare disease ELSI research agenda. Article. Full-text available ... sample size and statistical power must be kept [1].

Ethical, Legal and Social Implications (ELSI) (Research R01 Clinical ...

Description Providing ethical guidance for the development of individualized genomic medicine as rare as N-of-1 - Project Summary Many Americans (mostly ...

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

... Files/PA-19-217.html . Publications that cite this publication. Developing a community-led rare disease ELSI research agenda. Courtney Berrios, Macy McBeth ...

EveryLife Foundation for Rare Diseases

We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of ...

Ongoing International Initiatives on Undiagnosed Rare Diseases ...

Making a diagnosis for a rare genetic disorder can be very challenging. Currently, 6000–8000 rare diseases (RDs) are known to the scientific community [1], with ...

Engaging Stakeholders to Develop a Shared ELSI Research ...

... rare disease community that will inform development of the ELSI research agenda. ... additional cookies to analyze, improve, and personalize our content ...

Ethics and equity in rare disease research and healthcare

Considering the crucial role of genetic variation in the etiology of rare diseases, the development of next-generation sequencing technologies, ...

Search | NHGRI - National Human Genome Research Institute

The Clinical Center Genomics Opportunity promotes precision medicine and development of infrastructure to support clinical genomics at the NIH Clinical Center.

European Partnership under Horizon Europe Rare Diseases

supporting robust patient need-led research, developing ... Research Infrastructures would commit to operate and possibly further develop one or.

Rare Disease Community - National Organization for Rare Disorders

We partner with and support patient communities to develop collaborative research programs with research and medical communities to expand the availability of ...

Newcastle Centre for Rare Disease

Advanced Therapeutics represents an area of real strength for the Newcastle Centre for Rare Diseases and is one where we are keen to develop further and deeper ...

RD-Connect, NeurOmics and EURenOmics: collaborative European ...

rare disease community was recognized by the ... tifying new disease-causing genes, establishing new and ... novel disease genes (Table 1), of which 20 have been.

Measuring what matters to rare disease patients – reflections on the ...

... Other Diseases. 2017;9(5). Available from ... 2022, Orphanet Journal of Rare Diseases, № 1 ... Developing a community-led rare disease ELSI research agenda.