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Our Most Read Stories of 2019 Celebrate the Faces Behind Our Research
By limjr [at] email.chop.edu (Jillian Rose Lim)
Papers and press releases tell the stories of this year’s scientific breakthroughs, but behind the facts, figures, and the p-values, our most read stories of 2019 turned out to be about people at the Research Institute. After peeking into our data to discover which Cornerstone blog posts captivated our readers’ attention, we were thrilled to find stories about our doctors, researchers, nurse practitioners, and patients resonated the most with our audience.
Here is a lively list that celebrates the faces behind our research, from the friendships between faculty that fostered innovative research, to a team of “super sleuth” scientists committed to helping children with undiagnosed diseases, and so much more.
Remembering Beloved CHOP Nurse Patricia Brophy
A decades-long friendship, a continuing legacy, and a commitment to helping children with few options: One of our most read, shared, and re-tweeted blog posts of the year received an overwhelming response from members of our CHOP community as it covered the story of Patricia “Pat” Brophy, beloved nurse practitioner, through the Pat Brophy Endowed Chair in Neuroblastoma Research.
Brophy, who died 11 years ago, remains vivid in the memories of her colleagues, patients, and their families. In our Cornerstone story, Yael Mossé, MD, associate professor in the Cancer Center and leading neuroblastoma expert, shares why becoming the Chair’s inaugural holder this year holds deep and significant meaning. Brophy was one of her first mentors at CHOP, a cherished friend, and a partner in her research into cancer of the nervous system. The endowment allows Dr. Mossé to continue honoring Brophy’s commitment to helping neuroblastoma patients by developing even more precise ways to diagnose and treat the condition.
“[Pat’s] memory, her grit, and her passion for these kids is always with me,” Dr. Mossé said. “And now, to be able to carry her with me as I move forward in a new phase of my career is humbling.”
Working Together to Ease the Diagnostic Odyssey
The “diagnostic odyssey,” that trail of appointments, tests, examinations, and misdiagnoses when a child has a perplexing condition, can be overwhelming for patients and their families. But as of this year, a team of “super sleuth” investigators from CHOP and the University of Pennsylvania are working together to strategically help those struggling with a diagnosis. Our blog post, which tells the story of our status as a newly designated Undiagnosed Diseases Network site alongside the University of Pennsylvania, met with much love on our social media channels.
In the blog, Kathleen Sullivan, MD, PhD, chief of the Division of Allergy and Immunology at CHOP and co-director of the CHOP/Penn site, shared how a team of “the best and the brightest specialists” will meet regularly to tackle tough pediatric cases. “In the end, we will deliver the news about the diagnosis and, importantly, how that is going to change and customize their therapy — how that is going to help them be healthier,” Dr. Sullivan said.
Preventing Hemorrhage in Severely Injured Children
The hours following a traumatic injury are critical when it comes to managing uncontrolled bleeding. Sage Myers, MD, MSCE, an emergency department physician, and her team are trialing an intervention to prevent hemorrhage postinjury, giving children the most optimal chance of survival. Our story on this study, the Traumatic Injury Clinical Trial Evaluating Tranexamic Acid in Children (TIC-TOC), received some of the highest engagement and interest. In it, Dr. Myers explains how TIC-TOC seeks to build an evidence base for TXA, an antifibrinolytic agent, in the treatment of traumatic injury in children. In adult trials, TXA was found to decrease the need for blood transfusion and result in reduced mortality from bleeding in adults, when administered within three hours of a hemorrhagic injury.
“The potential to have a medicine would be amazing, but we’ve had drugs in the past that worked for adults and did not have the same effect for children,” Dr. Meyers said. “Whatever the outcome, we always keep moving forward, and always keep looking for better ways to treat children.”
Life After Cancer: Helping Survivors Manage Follow-Up Care
How can we help childhood cancer survivors live their most optimal lives by adhering to follow-up care? This is a question that captured the attention of a large number of our readers and one that Lisa Schwartz, PhD, attending psychologist in the Division of Oncology, hopes to answer through a five-year study of 600 adolescent and young adult (AYA) long-term survivors.
In a story published earlier this year, Dr. Schwartz shared how her team’s work targets the precarious point in time when survivors transition from pediatric to adult care. During this period, parents may play less of a role in managing their child’s health despite the fact that risks for chronic or life-threating late effects from treatment can emerge. Findings from Dr. Schwartz’s study will help her team better understand the patterns and predictors of AYA self-management and identify the skills that best prepare them to transition from pediatric to adult care.
“Ultimately, this study could inform a more tailored approach to intervention to keep AYA survivors at risk for poor self-management and disengagement more motivated and engaged,” Dr. Schwartz said. “They survived cancer. We want to protect that investment and have them live long healthy adult lives.”
Protecting the Brain from HIV’s Impact
This year, we released a multimedia storytelling series that featured the network of research underway at CHOP to better understand how to protect the brain from HIV. Following decades of research into human immunodeficiency virus (HIV), the development of new antiretroviral therapy (ART) combinations and early testing methodologies has offered people living with HIV opportunities for a durable, functional cure. Nevertheless, HIV associated neurocognitive disorder (HAND) persists in nearly 50 percent of both children and adults infected with the virus, causing cognitive, behavioral, and motor deficits, even when ART keeps the virus under control.
Through videos, photos, and text, we featured the work of Steven D. Douglas, MD, professor of pediatrics and director of the Clinical Immunology Laboratories at CHOP; Sarah Wood, MSHP, an attending physician who provides medical care to youth living with HIV at the CHOP Adolescent Initiative clinic; Richard Rutstein, MD, pediatrician and medical director of the Special Immunology Service at CHOP; Judith Grinspan, PhD, research scientist at CHOP; Kelly Jordan-Sciutto, PhD, director of Biomedical Graduate Studies at Penn; Deborah French, PhD, director of the Human Pluripotent Stem Cell Core; Jennifer McGuire, MD, MSCE, neurologist and epidemiologist at CHOP; and Stewart Anderson, MD, director of research for the Department of Child and Adolescent Psychiatry and Behavioral Sciences. The work of these superstar scientists often intersects and overlap, forming a strong concerted effort to dig deep into this important research field.
We also travelled (in theory) across the globe to learn about efforts in Botswana to address mental health conditions that can come with an HIV diagnosis led by Elizabeth Lowenthal, MD, MSCE, research director for CHOP’s Global Health Center.
As in previous years, these stories remind us of the spirit of discovery our researchers exhibit every day in so many ways, and we couldn’t be more proud!