Nov 8 2017

Is Mindfulness Important for Mothers of Babies With Heart Conditions?

The Findings:

A cardiac intensive care unit (CICU) filled with tiny infants connected to collections of tubes and buzzing monitors can be an intimidating and overwhelming place for a mother who is worried about her newborn with congenital heart disease (CHD). A Children’s Hospital of Philadelphia team of nurse researchers conducted a qualitative study in which mothers of babies who have a complex heart condition described the post-diagnostic period, surgery, and the CICU stay as extremely stressful. The researchers also examined mothers’ coping mechanisms, and they identified mindfulness as a potential helpful early intervention tool to reduce mothers’ stress.

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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 24 2017

Invite to Innovation: Penn Health-Tech Bridges Gaps in Medical Device Ecosystem

How do you turn an idea into an invention, a discovery into a device, or a project into a product that will impact how we care for children and drive innovation? Whether it’s finding funding, partnering with the right team members, or accessing the most effective resources, researchers and entrepreneurs face many barriers before they’re able to bring an idea to the bedside. With the launch of the new Center for Health, Devices, and Technology (Penn Health-Tech), faculty members at Children’s Hospital of Philadelphia now have the opportunity to access a main ingredient that helps to break through many of those barriers: connections.

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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 13 2017

Translational Research Workshop Bridges Gap Between Bench Research and Clinic

If you glance at a diagram of the continuum of translational research, the arrows point orderly to five phases — from basic research to improving population health. Rarely, however, is the business of discovery so neatly aligned. It takes unexpected twists and turns, as attendees at this week’s Children’s Hospital of Philadelphia Translational Research Workshop for Basic Scientists heard from experienced investigators who shared lessons that they’ve learned while pursuing their scientific endeavors.

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Oct 11 2017

Mind Meets Body in New Lupus Research: Q & A With Andrea Knight, Rheumatology Physician

When children have lupus, they often deal with more than just the physical burden of the autoimmune condition. Along with the swollen joints, skin rashes, ulcers, kidney disease and chest pain common to lupus, many of our pediatric patients also carry with them depression, anxiety, memory problems, and brain fog – all of which can adversely affect their school and social lives.

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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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