Wanted: Patient Feedback on Clinical Trials

July 20, 2009Did you know that only 6% of people suffering from severe chronic illness participate in clinical trials?

The good news in our community is that 80% of the US thalassemia patient community realizes that clinical trials often do not have enough patients enrolled, and an impressive 87% of the patients who responded to our recent survey on clinical trials told CAF that they had signed up to participate in trials.

On the other hand, only 80% felt that the trials were designed to accommodate their personal needs, and only 12% of patients believed that clinical trials are “very safe.”

CAF National Executive Director Gina Cioffi shared these and other results from our survey at a National Institutes of Health (NIH) meeting in May. This input from patients enabled CAF to share legitimate barriers to patient participation in trials and provide suggestions for how to achieve a better fit between the needs of the trial designers and the needs of potential participants.

For example, patients told CAF that they would like to see investigators make accommodations to better fit the lifestyle of patients and provide a follow-up to participants regarding the study’s results and conclusions. Patients also shared that they would like to see more studies that give them information about their health status or demonstrate a direct benefit to them.

“While CAF has long promoted on its website and newsletters open clinical trials, we were thrilled to have an opportunity to present the views of the patient community to the NIH,” stated Ms. Cioffi. “CAF patient feedback reinforced our request that the NIH and investigators adopt a community based approach that acknowledges patients are experts and that their feedback is essential to trial design.”

CAF plans to continue to solicit survey responses, so if you are interested in participating, please download the survey by clicking here.

For a PDF of the NIH presentation, please click here.

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