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“It didn’t feel like anything unusual because we had already been through so much”: Disability-Related Research Experiences of Families with Children Enrolled in the Undiagnosed Diseases Network
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DOI：10.1016/j.gim.2026.102663.png)
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Abstract
En 中文
In recent years, researchers have brought attention to the underrepresentation of people with disabilities in biomedical research, including genomics research. However, little is known about how disability-related experiences influence participation in rare disease research. This omission is striking, because rare diseases are associated with disabling phenotypes that affect multiple body systems. As part of a study interrogating the relationship between rare disease status and disability identity, we conducted mixed-methods research to address this knowledge gap.
Keywords:
List of Keywords: disability inclusion in genomics research
UDN
ethical
legal
and social implications of genetics and genomics
rare/undiagnosed diseases
qualitative research
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6.2
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5.1K
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2.0W
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