Good Morning America, Roberts Center Grand Opening, Center for Thoracic Insufficiency Reunion, Healthcare Innovator Award, Dragon Master Foundation

Onwards and upwards: Last week’s grand opening of the new Roberts Center for Pediatric Research coincided with a series of exciting news that suggest breakthroughs are on the horizon, and also give us a sense of how far research at Children’s Hospital of Philadelphia has come. From a nationwide reunion of our Center for Thoracic Insufficiency patients to new leaps in digital healthcare innovation, these headlines thrill us just as much as the Roberts Center’s panoramic view of Philadelphia’s Schuylkill River. First on the docket: A spot on “Good Morning America”!

‘Good Morning America’ Goes Live With Madeline Bell and Violence Prevention Initiative

Tune in this morning at 8:20 to 6ABC’s Good Morning America (GMA) for a live broadcast at our Karabots Pediatric Care Center featuring the Violence Prevention Initiative (VPI) and a chat with Madeline Bell, president and chief executive officer of CHOP. VPI is an evidence-based program designed by the Center for Injury Research and Prevention that strives to reduce the incidence and impact of aggression on children and families. The VPI continues to develop its approaches based on current research, but it has a variety of “VPI Signature Programs” focused on education and interventions in school and clinical settings. We are so excited that GMA is showcasing VPI as one of CHOP’s most impactful community-involved programs with plans to show footage of a VPI program in a school as part of today’s segment.

(If you couldn’t catch the live broadcast, you can learn more about the VPI on Cornerstone and the CIRP website.)

Roberts Center for Pediatric Research Gets Its Grand Opening

Last week, we celebrated the much anticipated grand opening of the Roberts Center for Pediatric Research, the latest addition to our hospital campus that began development around 2010. With 21 floors, 466,000 square feet, a collaborative floorplan designed with input from CHOP employees in a variety of departments, and a spectacular view of Philly, the Center gives CHOP investigators the room to conduct impactful research that will continue to change children’s lives. Some CHOP departments have already made the move to their new spaces in Roberts.

In 2016, the Roberts Family donated $25 million toward the Roberts Collaborative for Genetics and Individualized Medicine, housed at the Roberts Center. At the grand opening, Bryan Wolf, MD, chief scientific officer at CHOP, said that he believes the Center and the collaborative will help transform our efforts to progress personalized medicine. The Roberts family, Madeline Bell, Dr. Wolf, and many CHOP employees, friends, patients, and families all attended the grand opening.

Families and Physicians Gather at Center for Thoracic Insufficiency Syndrome Reunion

On Sunday, May 21, CHOP’s Buerger Center for Advanced Pediatric Care lit up with games, face painting, music, and gab for the annual Center for Thoracic Insufficiency Syndrome (CTIS) Family Reunion. Patients and families traveled from all over the country to reconnect with the doctors, nurses, and clinical staff who they have worked with at the Center, as well as to meet and discuss their experiences with Thoracic Insufficiency Syndrome (TIS).

In TIS, children have spinal and chest deformities early in life that affect their ability to breathe, as well as for their lungs to develop. Many patients treated at the Center are also involved in CTIS research. In this year’s Annual Report, we told the fascinating story of how the Center’s new status as a Frontier Program will allow investigators to move forward and better understand the mechanics of thoracic insufficiency, establish evidence to support new surgical strategies, perform sophisticated imaging,  develop new metrics for patient outcomes, and more.

"The CTIS reunion continues to be one of my most cherished days of the year,” said Robert Campbell, MD, director of the Center. “It's extremely gratifying to watch the patients who our team treated mature and lead happy, healthy lives. It's a pleasure and a privilege to care for them.”

Read more about the fabulous CTIS reunion in the press release.

Dr. Bimal Desai Honored With Healthcare Innovator Award

In the last decade, technology has allowed physicians to turbocharge the way they interact and treat patients, from recording patient data to communicating more effectively. One CHOP innovator, Bimal Desai, MD, assistant vice president and chief of Health Informatics at CHOP is at the cusp of the most cutting-edge advances: At last Thursday’s black-tie gala, the Philadelphia Alliance for Capital and Technologies (PACT) awarded Dr. Desai with the Healthcare Innovator Award, an honor that recognizes a company, researcher, or investor whose innovative solutions positively impact quality, cost, and access to healthcare. Dr. Desai co-founded Haystack Informatics, a company that protects patient privacy by tracking patient’s electronic health records (EHR) along with healthcare employees’ patterns of behavior and had its earliest beginnings in CHOP’s “Open Canvas” innovation competition in 2014. We covered the company’s early development in our 2014 Research Institute Annual Report. Dr. Desai also helped develop CHOP’s new Digital Health Program, which leverages technology to improve pediatric healthcare with a four-pronged approach: Care Anywhere, Engage and Connect, Research Excellence, and Enhanced Partnerships.

Learn more about Dr. Desai’s new honor in the press release.

New Clinical Trial Places Multi-Center Patient Data in the Cloud

Making patient data immediately accessible in a live, real-time “cloud” is the latest innovative feature in a new clinical trial headed by Pacific Pediatric Neuro-Oncology Consortium (PNOC), and the Children’s Brain Tumor Tissue Consortium (CBTTC), a multi-disciplinary collaboration established and led by CHOP investigators Adam C. Resnick, PhD, scientific chair of the CBTTC; Phillip Storm, MD, chief of the division of Neurosurgery; and Peter C. Phillips, MD, director of the Pediatric Neuro-oncology Program at CHOP.

With a recently announced funding gift of $300,000 from the Dragon Master Foundation, the trial will provide personalized treatment to children with Diffuse Intrinsic Pontine Gliomas (DIPG), a tumor that begins in the brain stem and can spread rapidly with a very low survival rate.

Not to be confused with the white fluffy shapes in the sky, the technological cloud is a place on the internet where lots of patient data can live, and where researchers can access the information anywhere, anytime. By placing patient data in one space in the cloud, researchers will be able to compare samples from various institutions involved in the CBTTC and PNOC in real-time, and better formulate an individualized treatment plan for each child in the trial.

"No longer will we have to rely on one-size-fits-all medicine,” stated Amanda Haddock, president of Dragon Master Foundation, in a press release. “These patients will get treatments customized to their specific mutations to the full extent of our medical knowledge. It's truly precision medicine, and it is being enabled first for the most vulnerable of patients, those children with DIPG who so desperately need answers before their time runs out."

Learn more about the clinical trial in the press release.

ICYMI

Recently on Cornerstone, we took a research snapshot of the 11-year follow-up to the Caffeine for Apnea of Prematurity (CAP) Trial and sat down with Rebecca Ahrens-Nicklas, MD, fellow in the divisions of Human Genetics and Metabolism at CHOP, to chat about the importance of more thoughtful breastfeeding in a baby’s first few days of life.

Here are our headlines from our May 19 edition of In the News:

• American Medical Society of Sports Medicine Honors Dr. Christina Master
• CHOP & Penn Engineering Team Up for Concussion Research
• Over 70 CHOP Researchers Convene at PAS Meeting
• Stephan Grupp Named Chief of Cellular Therapy and Transplant in Oncology Division
• Newly Discovered Genetic Influences in Type 1.5 Diabetes May Herald Better Treatment

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