Publication: Gathering the Stakeholder’s Perspective: Experiences and Opportunities in Rare Genetic Disease Research
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Abstract
Background: Research participant feedback is rarely collected; therefore, investigators have limited understanding regarding stakeholders’ (affected individuals/caregivers) motivation
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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
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