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.
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.
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.
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!
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.
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.
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.
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.
This week, new research findings at Children’s Hospital of Philadelphia are propelling the way we think about autism, single ventricle survivors, and neuroblastoma forward, as our investigators continued to push the boundaries of what we know.
The human genome provides a precise, biological blueprint of life. To implement this blueprint correctly, the genome must be read with great precision, but it’s impossible for this process to be completely error-free. Mistakes during transcription — random errors in how DNA sequences are copied for a gene to be expressed — can happen any time in any number of ways.