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

White, Lauren; Crowley, Blaine; Finucane, Brenda; McClellan, Emily; Donoghue, Sarah; Garcia, Sixto; Repetto, Gabriela; Fischer, Matthias; Jacquemont, Sebastien; Gur, Raquel; Maillard, Anne; Donald, Kirsten; Bassett, Anne; Swillen, Ann; McDonald, Donna

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

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Gathering the Stakeholder's Perspective Experiences and Opportunities in Rare Genetic Disease Research.pdf (2.44 MB)

Date

2023

Type:

Article

Collections

Artículos Medicina y Ciencias de la Salud

Descargas totales

44

Vistas totales

4

Métricas

Gestores bibliográficos

Authors

White, Lauren

Crowley, Blaine

Finucane, Brenda

McClellan, Emily

Donoghue, Sarah

Garcia, Sixto

Repetto, Gabriela

Fischer, Matthias

Jacquemont, Sebastien

Gur, Raquel

item.page.doiurl

https://doi.org/10.3390/genes14010169

URI

https://hdl.handle.net/11447/8802

item.page.accessRights

Acceso Abierto

Abstract

Background: Research participant feedback is rarely collected; therefore, investigators have limited understanding regarding stakeholders’ (affected individuals/caregivers) motivation to participate. ...

Citation

White, L.K.; Crowley, T.B.; Finucane, B.; McClellan, E.J.; Donoghue, S.; Garcia-Minaur, S.; Repetto, G.M.; Fischer, M.; Jacquemont, S.; Gur, R.E.; et al. Gathering the Stakeholder’s Perspective: Experiences and Opportunities in Rare Genetic Disease Research. Genes 2023, 14, 169. https://doi.org/10.3390/ genes14010169

Keywords

Copy number variations (CNVs) , Neurodevelopmental psychiatric disorders (NPDs) , 22q11.2 deletion syndrome

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