Improving Representation in Clinical Trials: James Beck, PhD


The chief scientific officer and senior vice president of the Parkinson’s Foundation discussed the importance of accessibility in clinical trials.

“Precision medicine should be for everybody. And so, by having a comprehensive approach to recruiting individuals with Parkinson's, especially reaching out to underrepresented communities, we aim to ensure that that will actually come to fruition and everybody can benefit from the latest therapies that may be coming down the pike.”

As precision medicine and gene therapies are starting to be explored and tested in more fields, a greater knowledge base of patient genetics is needed to support this. The Parkinson’s Foundation has launched PDGENEration (NCT04057794) in response to this unmet need. The initiative offers genetic counseling and testing to people with PD, which the Foundation believes needs to become part of the standard of care to enable future genetic medicine treatment or participation in clinical trials.

Currently, many patients with PD have not been genetically tested and their genetic status remains unknown. Participation in PDGENEration is available at-home or in-person at sites across the US to people with PD.

CGTLive spoke with James Beck, PhD, chief scientific officer and senior vice president, Parkinson’s Foundation, to learn more about how PDGENEration can help identify participants for future clinical trials. He also discussed initiatives to make trials more accessible to different populations which also facilitates the study of unique population genetics. Neurologists seeking more information about PD GENEration can visit or email [email protected] questions about enrollment.

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