Gathering the Stakeholder’s Perspective: Experiences and Opportunities in Rare Genetic Disease Research

Background: Research participant feedback is rarely collected; therefore, investigators have limited understanding regarding stakeholders’ (affected individuals/caregivers) motivation to participate. Members of the Genes to Mental Health Network (G2MH) surveyed stakeholders affected by copy number v...

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Detalles Bibliográficos
Autores principales: White, Lauren K., Crowley, T. Blaine, Finucane, Brenda, McClellan, Emily J., Donoghue, Sarah, Garcia-Minaur, Sixto, Repetto, Gabriela M., Fischer, Matthias, Jacquemont, Sebastien, Gur, Raquel E., Maillard, Anne M., Donald, Kirsten A., Bassett, Anne S., Swillen, Ann, McDonald-McGinn, Donna M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9859499/
https://www.ncbi.nlm.nih.gov/pubmed/36672911
http://dx.doi.org/10.3390/genes14010169

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9859499/
https://www.ncbi.nlm.nih.gov/pubmed/36672911
http://dx.doi.org/10.3390/genes14010169

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