INSIGHTS •   •   •   •   •   •   •   •   •   •   •  

Sep 13

Written by: Ken Kahtava
9/13/2012 3:22 PM  RssIcon

According to CenterWatch, 94% of people recognize the importance of participating in clinical research in order to assist in the advancement of medical science. Yet 75% of the general public state they have little to no knowledge about the clinical research enterprise and the participation process. This certainly underscores the challenges inherent in clinical trial execution these days.

Would it surprise anyone to know that perhaps <1% of patients with a rare disease turn to their physician for insights on clinical trials?

Beginning earlier this year, NSGP assembled a PARTNER program between a leading rare disease patient advocacy group, a pharmaceutical company and their CRO(s), for purposes of heightening patient and provider awareness and education in regards to clinical trials. This is a deep-dive on patient psyche, attitudes and perspectives, and for this particular disease area, a landmark project that will provide the ecosystem of patients, providers and industry stakeholders with a roadmap for successful clinical trial engagement.

Back to that <1% - As we analyze the data we are collecting on these surveys, we'll be sure to share what we learn (de-identified, or course). While it appears there is plenty of need and opportunity to bring rare disease clinical trial awareness and education to medical providers, the path to effectively doing so appears to run right through the patient advocacy organization. The same patients who indicated that they didn't rely on their physicians for clinical trial information said overwhelmingly that their advocacy organization is their singular, go-to source - to the tune of >70%.

Stay tuned - there's much, much more to come.

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