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URMC / Clinical & Translational Science Institute / Stories / May 2017 / Working to Save and Improve Lives at URMC on Clinical Trials Day

Working to Save and Improve Lives at URMC on Clinical Trials Day

May 20th is Clinical Trials Day, an international day of recognition for clinical trial participants, scientists, and study teams that make new health care discoveries possible. The CTSI offers a spate of services and resources to help researchers design, implement, and recruit participants for clinical trials, including the Clinical Research Center (CRC).

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 wastes away muscle. During a drug infusion at the CRC, 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 CRC so close to their home in the city of Rochester.

“If we didn’t have the CRC, 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. “I’m glad we live in a city where they can accommodate him.”

On the other hand, clinical trial participants 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 CRC,” says Giovanni Schifitto, M.D., M.S., director of the CRC 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.”

Micheal Jones in the Clinical Research CenterMichael started coming to URMC when he was diagnosed with FSHD at 12 years old. For the last few years, he has been coming to the CRC for clinical trials that mostly help researchers better understand FSHD. Michael hopes that his participation in these trials will help find a cure – and not just to benefit himself.

"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.

The CRC commonly carries over 100 studies 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 CRC aids with the implementation phase of a trial, the CTSI also offers help with designing trials, navigating regulatory processes, recruiting diverse participants, training study personnel, and managing clinical data. The CTSI is also part of a new 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 URMC 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, just like Nathaniel and Michael.


Susanne Pritchard Pallo | 5/19/2017

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