Research attitudes in families of individuals with down syndrome: importance for clinical trials

HIGHLIGHTS

SUMMARY

    Despite the important and growing attempts to include people with DS in AD research, little is known about attitudes that may influence trial participation. Failure to understand attitudes towards research by legally authorized representatives of people with DS may contribute to the larger issue of under-representation of people with intellectual disability in randomized clinical trials. Attitudes toward research, and toward clinical trials specifically, have been extensively studied in the general (non-DS) population at risk for AD. Each of these approaches can be informed by improved understanding of the research attitudes of family . . .

     

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