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Data4SCD

Boosting Patient Input and Involvement in Clinical Trials

As one Roundtable participant noted, “even while patients have a seat at the table, they do not often have access to the grocery store.” SCD patients are often poorly represented in clinical trials and as a result, struggle to understand the key results from emerging research or express concerns to researchers evaluating new treatments. 


One potential solution would be to develop better industry, academic, and patient advocacy partnerships to ensure that patients have a seat at the table and can provide critical feedback to researchers during clinical trials. AI driven approaches may be able to help match eligible patients to clinical trials.  


What data could ensure that more patients are included in clinical trials?

Paul Kuhne

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