Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020

By Jeff Terkowitz

Lesley Gosden, a patient and patient advocate with Parkinson’s disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port for infusions of GDNF directly into the brain of Parkinson’s patients, bypassing the blood-brain barrier. Ms. Gosden is one of those who experienced an enormous benefit from the GDNF: prior to her involvement in the trial, she was wheelchair bound. Afterwards, she could walk again. Her symptoms have remained stable over the last three years. A BBC documentary, filmed over a six-year period, shows some amazing changes.2 Yet the trial failed to meet its primary endpoint. What happened?

For Ms.Gosden and other patients in the trial, there was a major problem with the design of the trial: Patient Reported Outcomes (PROs) were not taken into account. Moreover, patient quality of life was not a primary endpoint. The tool used to assess physical symptoms did not capture the experiences of the patients. She and the other patients in the clinical trial believe that, if there had been patient input in the clinical trial design, this clinical trial would have been deemed a success. Patients know a great deal about their diseases because they are living with them every minute of every day. Capturing that knowledge is possible by asking patients directly and through linguistic analysis of their communications. A multi-wave approach can help researchers obtain in-depth information during clinical trial design and development.

Digging Deeper

A recent experience with one of our clients shed new light on the uses of multi-wave research for Research and Development teams. Hannah Eccard, MA, Research Manager at Inspire, will share the benefits of long-term research to obtain patient insights and experiences in a webinar.

Eccard will describe case studies that show the benefits of using surveys, interviews, online virtual boards, and sociolinguistic analysis of online conversations in waves to obtain in-depth information; inform clinical trial protocols; determine areas of need; and describe patient journeys. She will show that, by using waves of surveys, clients have been able to gain a more nuanced understanding of the patient experience. In another example, she will describe how a virtual advisory board can provide in-depth data on a single group of patients over time.

Join Inspire for this free, 45-minute webinar, on Thursday, February 20 at 2 pm ET / 1 pm CT.

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Register for this webinar, Digging Deeper, Reaching Farther: Multi-Wave Research Yields Clinical Patient Insights

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1 Couch Report Patients As Partners Europe 2020.

2 BBC documentaries The Parkinson’s Drug Trial: A Miracle Cure?