Tag Archive: clinical trials

May 11 2018

Clinical Research Coordinators Get Crowns and Congratulations

Clinical research coordinators are the heart and soul of our research breakthroughs, as many of our investigators and staff at Children’s Hospital of Philadelphia know. Whether they’re ensuring that a study falls within regulatory protocols, explaining the science behind a health condition to a family, or simply spending time with patient participants to put them at ease, coordinators bridge the gap between an idea and its execution, as well as between scientists and the patients whose outcomes they hope to improve.

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Apr 27 2018

“Unique, Different, and Special”: Ben Hartranft Speaks Up for Autism

Nineteen-year-old Ben Hartranft remembers the first research study he participated in at the Center for Autism Research (CAR) nearly eight years ago. Though he was just 12, he didn’t feel nervous or scared about the functional magnetic resonance imaging machine that would capture images of his brain. Instead, Ben’s mom recalls him joking that the researchers could duct tape his legs to the chair to help him keep still (which, of course, wasn’t necessary).

“I just stayed still, and it was very fun,” Ben said.

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Feb 26 2018

John Maris, MD, Receives National Cancer Institute Outstanding Investigator Award

Long before he entered medical school, John M. Maris, MD, pediatric oncologist and the recent recipient of the National Cancer Institute’s Outstanding Investigator Award, became captivated by the mysteries of neuroblastoma. A cancer of the peripheral (not brain) nervous system, neuroblastoma accounts for 7 percent of all childhood cancers and 15 percent of all childhood cancer deaths.

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Nov 13 2017

Strengthening Duchenne Muscular Dystrophy Research: Antonio Rosato

From the time Antonio Rosato was diagnosed with Duchenne muscular dystrophy (DMD) at age 4½, his family was eager for him to participate in a clinical research trial. They wanted to give him access to the latest advances in pharmacological and disease management approaches for DMD, an opportunity that Antonio’s uncle Artie, who was diagnosed with the same neuromuscular disease four decades ago, did not have.

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Nov 3 2017

Weight and CHD, Tumor Biology, I-ACT Grant, Mitochondrial Disease Guidelines

As the November chill settles in, warm up to new scientific discoveries and novel projects for improving children’s health from our researchers at Children’s Hospital of Philadelphia. In our roundup of research headlines, we share the latest findings on the biology of pediatric low-grade gliomas – the most common childhood brain tumor – congratulate Christopher Forrest, MD, in his role as co-investigator of a new FDA-funded clinical trials network, and give you the highlights on two new papers from researchers in mitochondrial medicine and cardiology.

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Oct 31 2017

A Day in the Life of a Clinical Research Coordinator

Editor’s Note: Our clinical research coordinators at Children’s Hospital of Philadelphia are a unique professional hybrid. Part researcher, healthcare professional, data coordinator, social worker, personal coach, and travel concierge, they go above and beyond their job descriptions in order to help families navigate the complexities of participating in clinical research studies. We invited Joshua Zigmont, RN, BSN, who has been a nurse research coordinator for seven years, to describe a typical day on the job. The first thing he told us is that the most consistent thing about the position is its inconsistency: “You have to be flexible because you never know when a curveball is coming,” Zigmont said. So while no day is ever typical, here is a glimpse of a day in the life of a clinical research coordinator.

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Oct 27 2017

Friedreich’s Ataxia Community Stays on Top of Science and Stays in Touch

Patients and families dealing with the rare, debilitating disease Friedreich’s Ataxia showed their true strength at the 10th Annual Friedreich’s Ataxia Symposium held in King of Prussia, Pa. The FA community is a steadfast supporter of research, and they have been gathering for a decade to spend a day with each other building friendships and learning the most up-to-date information on the therapeutic approaches and scientific studies being conducted in the field of FA.

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Oct 20 2017

Flaura Winston NAM Election, Philadelphia Pediatric Medical Device Consortium, SeeIV, Boyle Scientific Achievement Award

At Children’s Hospital of Philadelphia, our investigators are continuously helping to develop evidence-based technology that will improve the way we care for and protect children’s health. And in this week’s headlines, we’re seeing that happen in more ways than one. From the creation of devices that will make the lives of clinicians and patients easier, to providing seed grants for novel innovations through the Philadelphia Pediatric Medical Device Consortium, to informing safe practices for technology through renowned organizations like the National Academy of Medicine, we invite you to keep reading to learn what our researchers are up to!

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Oct 16 2017

Research Family Partners Program Brings New Dimension to Research Studies

Editor’s Note: Our guest blogger, Amy Kratchman, has been working with clinicians and researchers since 2008 as a family representative. She is the mother of three children with special healthcare needs. As a family consultant at Children’s Hospital of Philadelphia, Kratchman co-leads numerous family-centered care initiatives. She collaborates with senior hospital leaders and staff to ensure that the institution’s operating plan and programmatic goals are responsive to the needs of children and families. Kratchman co-leads Family Partners, an innovative program developed and implemented at CHOP, to maximize the meaningful engagement of families in all aspects of the pediatric healthcare delivery system. Engaging parents and youth in research is a major focus of this work.

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Oct 9 2017

From Baking to Biomedicine: Nick Pautler Won’t Let ALL Define Him

Editor’s Note: This occasional blog series features stories of CHOP research heroes who have participated in clinical research studies. Without the generosity and dedication of families, patients, and members of the public who take the time to be a part of research, many trials would not succeed.

Nick Pautler, a biomedical engineering student at the University of Delaware, can tell you how a lot of things work – from the microbial science behind baking sourdough bread, to the intricacy of model railroads, to the way that an army of re-engineered T-cells worked hard to fight the cancer cells in his body this past year.

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