"Match-Making" Clinical Trial Services Help Spread the Word to Patients

"Match-Making" Clinical Trial Services Help Spread the Word to Patients

04.24.12 | By Kate Connors

This morning, my colleague Sharon Brigner alerted me to an article in the Wall Street Journal (subscription required) about some efforts by patient advocacy groups to help increase patient awareness of clinical trials.

Of course, here at PhRMA, we understand how essential clinical trials are to the work that our member companies do - and we also know that without patient enrollment, there would be no trials. It's one reason why we highlight the trials that are ongoing on different states.

The programs, such as the "Fox Trial Finder" being launched by the Michael J. Fox Foundation for Parkinson's Research and the Alzheimer's Association's "TrialMatch," are intended to help patients ferret through the vast amounts of information at ClinicalTrials.gov by presenting trials to patients based on, for example, their illness and location. One representative called it "'a dating service for clinical trials.'"

This could be an important service. As Sharon - a neuroscience nurse who has worked with patients in clinical trial settings - ClinicalTrials.gov is an "important tool and conversation piece for use with your healthcare provider, who may or may not be familiar with trials for your condition."

But clearly that information isn't reaching patients as effectively as possible. The article cites the Tufts Center for the Study of Drug Development: "Less than half of Phase II and Phase III studies complete enrollment within their original timelines, and it takes twice as long as planned for 39%. Eleven percent of research sites involved in such studies fail to enroll a single patient in active trials annually."

As I noted before, this is important for the biopharmaceutical companies who need clinical trials as an essential part of their R&D work. But it's also worth pointing out the benefit that trials can provide to patients. Enrollment in trials can perhaps provide access to a potential new medicine well before it comes to the market. But even if the medicine doesn't prove effective, or if the patient is given a placebo, the empowerment the patient experiences is also worthwhile.

One Parkinson's disease patient interviewed said: "'Completing a clinical trial makes me feel as if I'm doing something proactive toward finding a cure.'"

And the husband of an Alzheimer's disease patient said: "They think we are doing them a big favor and we think they are doing us a big favor, so it's a win-win." The article says that in his wife's first clinical trial experience, they didn't know if she received the experimental drug or a placebo, but "just the possibility of getting the drug was worth it."

Of course, clinical trials aren't for everyone. But in order for patients to make that decision, in collaboration with their physicians, they need to have information - and these new programs might be a great place to learn more.

Follow Kate on Twitter @KateAtPhRMA.

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