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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Bibliographic Details
Published in:	Genes Vol. 14; no. 1; p. 169
Main Authors:	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.
Format:	Journal Article
Language:	English
Published:	Switzerland MDPI AG 07.01.2023 MDPI
Subjects:	Altruism Attitude caregivers Consortia cooperative research Copy number DNA Copy Number Variations education Emotions Genetic disorders Humans Mental health motivation Participation Patient satisfaction Perceptions Polls & surveys Rare diseases Rare Diseases - genetics stakeholders Surveys Surveys and Questionnaires United States > US Europe 22q11.2 deletion syndrome neurodevelopmental psychiatric disorders (NPDs) copy number variations (CNVs)
ISSN:	2073-4425, 2073-4425
Online Access:	Get full text
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