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Product

ENGAGE Consortium, "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research

Center:

DC-Georgetown University Center for Excellence in Developmental Disabilities, UCEDD/LEND

Fiscal Year:

2026

Contact Information:

Tawara Goode
[email protected]
202-687-5387

Product Description:

Adults with intellectual disability can benefit from precision medicine research (PMR) but their participation in general studies is limited. Although data sharing may be critical for scientific findings to emerge, the views of adults with intellectual disability on data sharing are unknown.

Keyword(s):

decision-making, PMR

Product/Publication Type(s):

Peer-reviewed publications in scholarly journals Published/In Press

Target Audience:

Consumers/Families, Professionals, Policymakers, Students

Alternative Format:

Electronic (disc, CD, 508 compliant web posting)

To Obtain Copies (URL or Email):

https://doi.org/10.1016/j.gimo.2026.104368.

COVID-19 Related Data:

N/A