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Clinical Trials Connection’s First Year

December 23, 2010

Michele Yogerst has been running clinical trials for the past nine years. As a clinical research coordinator at the Arizona Research Center in Phoenix, she manages anywhere from four to six trials at a time, covering all areas of science.

She loves her job, but ask her what’s the toughest part of it, and she doesn’t hesitate to answer: recruiting patients for the studies.

In an extreme example of the difficulties faced, she tells the story of a study on a new treatment for diabetic peripheral neuropathy that holds the promise of actually regrowing nerves damaged by diabetes. The study launched last December and went a full six months without enrolling a single participant.

In the face of such challenges, Michele was thrilled to learn about JDRF’s Clinical Trials Connection – a service with the sole aim of helping connect people who have type 1 diabetes with clinical trials.

“Recruiting patients is always a huge challenge,” she says. “That’s why I think Clinical Trials Connection is such a wonderful tool. It’s a great site, and a great tool, and very user friendly.”

She’s far from alone in her esteem for JDRF’s Clinical Trials Connection. Since its launch in August 2009, about 15,000 people have signed up for the service – with enrollment now running about 1,000 people a month. People enrolled on the site range in age from eight months (by a parent) to 80 years, and most are Americans, with 2 percent being from other countries.

People who sign up for Clinical Trials Connection get help in identifying clinical trials of interest to them or their children with type 1. Specifically, the site enables them to search the National Institutes of Health’s (NIH) database of currently ongoing trials, including JDRF-funded studies. Users need only provide criteria like the type of trial they are interested in, how long they or their loved ones have had diabetes, and how far they’d be willing to travel, and the service lists all studies that match that data. It also provides contact information for the researchers conducting each trial, so users can contact them directly for more information after discussing their options with their healthcare providers.  To make that discussion easier, the site even enables users to create custom reports about trials of interest. And once people have registered with Clinical Trials Connection, the service will also automatically send them email updates on trials that are added to the NIH database that match their criteria.

JDRF developed Clinical Trials Connection because our constituents told us that such a service would be a tremendous benefit to them. JDRF also recognized that connecting people with clinical trials would advance our efforts to find better treatments and a cure for type 1 diabetes.

All information entered into Clinical Trials Connection is confidential – so JDRF does not know how many users have actually gone on to enroll in clinical trials. However, soon after the launch of the service, JDRF reached out to researchers around the country to ask if they had seen any impact on study enrollment. Several noted an uptick in the number of inquiries they had received from people interested in joining their trials.

Michele, the clinical research coordinator in Arizona, learned about Clinical Trials Connection when a person using the service called her about enrolling in the study on diabetic peripheral neuropathy. Unfortunately, the person did not meet the criteria for the study. But Michele is not discouraged. The more important point, she says, is that Clinical Trials Connection is providing a new bridge between potential study participants and the clinical trials that are critically important for making strides in the treatment of type 1 diabetes.

“The only way to get new drugs approved by the FDA is to do these trials,” Michele says. “Every single drug goes through this process. It’s essential. If we want things to be better or different, we have to go through this process.”

To learn more, visit the Clinical Trials Connection webpage.

View the video PSA below on Clinical Trials from JDRF National.

Article from the JDRF International Newsletter Life with Diabetes.

JDRF is a leader in setting the agenda for diabetes research worldwide, and is the largest charitable funder of and advocate for type 1 diabetes research. The mission of JDRF is to find a cure for diabetes and its complications through the support of research.

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To learn more about the JDRF Dallas chapter, visit our JDRF Dallas website!

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