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URMC / Clinical & Translational Science Institute / Stories / May 2017 / UR CTSI Clinical Research Center: Testing Tomorrow's Therapies Today

UR CTSI Clinical Research Center: Testing Tomorrow's Therapies Today

The University of Rochester Clinical and Translational Science Institute (UR CTSI) offers a host of services and resources to help researchers design, implement, and recruit participants for clinical trials, including the Clinical Research Center. Clinical trials conducted in the center offer hope for many study participants - for their own health and that of the next generation. 

Nathaniel Jackson: Close to home

Nathaniel Jackson holding his baby brother during a drug infusion in the Clinical Research CenterNathaniel Jackson is participating in a drug trial for Duchenne muscular dystrophy, a fatal disease that progressively weakens muscle. During a drug infusion at the Clinical Research Center, he holds his baby brother as his mother hovers over him, afraid the baby will pull out his IV. Nathaniel, half defiantly, half reassuringly says, "I can do this."

A simple statement that might come from any 10-year-old, but from Nathaniel, it holds deeper meaning. 

Nathaniel was diagnosed with Duchenne when he was 5 years old. Over the years, he has lost his ability to do many things. Climbing stairs is a now challenge for him and most children with Duchenne are confined to a wheel chair by their teens.

With no disease-altering therapies currently available, this clinical trial offers hope to Nathaniel and his family who are grateful to have the Clinical Research Center so close to their home in the city of Rochester.

“If we didn’t have the center, we would probably have to go to Columbus, OH – at least hours away, and that would be very hard,” said Nathaniel’s mother, Melanie Jackson, of her son's weekly visits to the Clinical Research Center. “I’m glad we live in a city where they can accommodate him.”

Michael Jones: A cure for my son

Micheal Jones in the Clinical Research CenterOn the other hand, clinical trial volunteers come from far and wide to take part in studies conducted here, like Michael Jones, a resident of Oakland, PA. Michael travels two hours to be in studies that aim to understand his rare disease, Facioscapulohumeral muscular dystrophy (FSHD), which also causes muscle to progressively deteriorate, but is less aggressive than Duchenne.

“We are lucky to have a resource like the Clinical Research Center,” says Giovanni Schifitto, M.D., M.S., director of the center and professor of Neurology at the University of Rochester Medical Center. “There are institutions that don’t have such a resource and therefore cannot do certain studies.”

Michael started coming to center when he was diagnosed with FSHD at 12 years old. For the last few years, he has been coming here for clinical trials that mostly help researchers understand FSHD. Michael hopes that his participation in these trials will help find a cure – and not just for his own benefit.

"I've got an 8-year-old son, so hopefully they'll find something so that if he does have this, they can cure it for him," said Michael.

Helping Researchers Conduct Clinical Trials

The UR CTSI's Clinical Research Center commonly carries over 100 clinical trials at a time that aim to cure, prevent, or better diagnose a myriad of diseases. From understanding the cause of cognitive decline in HIV patients to testing new drugs for Duchenne, the CRC and its staff are integral to a process that offers hope not only to their study participants, but to millions of people suffering with these diseases around the world.

While the center aids with the implementation of clinical trials, the UR CTSI also offers help with designing trials, navigating regulatory processes, recruiting diverse pools of participants, training study personnel, and managing clinical data. The UR CTSI is also part of a national clinical trial network, called the Trial Innovation Network, which aims to streamline clinical trial start up, reducing the time it takes to get trials off the ground.

All of these resources help researchers move their research forward and put the University of Rochester Medical Center at the forefront of biomedical research.  With these resources, our dedicated researchers strive to cure debilitating diseases and improve the lives of the millions of people suffering around the world, like Nathaniel and Michael.

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The Clinical Research Center and other clinical trial resources are supported by the University of Rochester CTSA award number UL1TR002001 from the National Center for Advancing Translational Sciences of the National Institutes of Health.

Susanne Pritchard Pallo | 5/19/2017

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