July 12, 2023

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UPDATES FROM RESEARCH ADMINISTRATION

Broadening the Pathway for Future Health Professionals

View the latest Manne Research Institute President's Message from Dr. Patrick Seed

As we welcome a new group of undergraduates to the Katz and Stanley Manne Children's Research Institute Summer Scholars Program, we’re reminded of how important this research and mentoring program is for inspiring future medical research careers. In the latest President’s Message from President and Chief Research Officer Patrick Seed, MD, PhD, read about the program’s past successes in encouraging summer scholars to pursue careers in medicine, and learn how we evolved the selection process to expand and diversify our applicant pool.

ORIC Operational Update

The Office of Research Integrity and Compliance (ORIC) is in the process of onboarding new IRB staff and recruiting for several open positions. Submission turnaround times may be impacted over the summer during this transitional period. We encourage investigators and study teams to contact IRB@luriechildrens.org to alert us of any urgent submission requests. Urgent items include emergency use requests, expiring studies with active participants, and submissions associated with funding implications.

Thank you in advance for your patience and understanding. ORIC strives to provide high quality review of human subjects research and customer service to our research community. Please continue to contact us with any questions or concerns.

The PICU Letter of Support Process Has Been Streamlined

The Pediatric Intensive Care Unit (PICU) has streamlined the letter of support request process. As a reminder, PICU review is required for studies that include direct recruitment from the PICU, conducting research with PICU patients or families, indirect recruitment from the PICU (e.g., EPIC pages or EPIC in basket notifications), or utilizing PICU services or staff for research purposes.

• To initiate a PICU letter of support, please use our online application. 
• To activate services, please provide a copy of the IRB approval letter, grant ID, and anticipated start date to the PICU contact Dena Fasheh.

Feedback Requested: Research Communication Effectiveness and Accessibility Survey

The Office of Research Development Communications team is soliciting feedback from the research community to further improve communications within Manne Research Institute. The short survey below focuses on communication effectiveness and accessibility of information. All responses collected will be confidential and results will only be shared in aggregate form. 

Please complete the first survey by July 21.

SCIENCE SHOWCASE

Ashley Plant-Fox Receives Grant from Pediatric Cancer Research Foundation 

The Pediatric Cancer Research Foundation recently awarded a 2023 research grant to Ashley Plant-Fox, MD, Attending Physician of Hematology, Oncology, Neuro-Oncology, and Stem Cell Transplantation, and A.M. Khokhar Research Scholar at Ann & Robert H. Lurie Children’s Hospital of Chicago. 

The grant will fund Dr. Plant-Fox’s research on combination immunotherapy for diffuse intrinsic pontine glioma, a highly aggressive and difficult-to-treat brain tumor that is typically found in children ages 5–8 years. There is no treatment available for this tumor, and most patients will succumb to their disease by 12 months from diagnosis. The 5-year survival rate is less than 1 percent. Previous research has shown that most of these tumors have genetic mutations in histone proteins that may be targeted by using immunotherapy. Dr. Plant-Fox developed a vaccine designed to trigger the immune system to recognize the genetic mutations in the tumor and use T cells to attack the tumor. Her new research will combine this vaccine therapy with two checkpoint blockade molecules that block proteins that would otherwise prevent T cells from attacking the cancer cells in a phase I/II clinical trial. 

The funding will also support another upcoming phase I/II trial which will combine anti-PD1 immunotherapy with targeted therapy, specifically mitogen-activated protein kinase pathway inhibitors for the treatment of BRAF-altered pediatric gliomas and replication repair deficient high-grade glioma. The hope is that the tumor-directed killing mediated by the targeted therapy will potentiate the immune response to the tumor. This concept has shown potential in other adult cancers, such as melanoma. This trial will be run through the Pediatric Brain Tumor Consortium with Lurie Children’s as the lead site and Dr. Plant-Fox as the overall principal investigator.  

A specialist in pediatric neuro-oncology, Dr. Plant-Fox is recognized for her expertise in immunotherapy and the treatment of diffuse intrinsic pontine glioma and other high-grade gliomas.

Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute. 

CURE Childhood Cancer Awards Research Grant to Kyle MacQuarrie 

Kyle MacQuarrie, MD, PhD, Attending Physician of Hematology, Oncology, Neuro-Oncology, and Stem Cell Transplantation at Ann & Robert H. Lurie Children’s Hospital of Chicago, has received one of three inaugural Early Investigator Awards from CURE Childhood Cancer. 

The award will fund Dr. MacQuarrie’s research investigating chromosomal organization in rhabdomyosarcoma cells. Rhabdomyosarcoma is a rare form of childhood cancer that resembles muscle tissue. While there is no definitive cause of rhabdomyosarcoma, researchers are studying certain genetic conditions that may increase the risk of developing the cancer. “The goal of my research is to help explain the origin of the gene fusion that is seen in some of the rhabdomyosarcoma tumors and hopefully help inform our understanding of the origin of pediatric gene fusions more broadly,” said Dr. MacQuarrie, a physician-scientist who specializes in pediatric solid tumors. 

Dr. MacQuarrie’s basic scientific studies focus on understanding the cellular and molecular mechanisms present in pediatric tumors that drive their development. He holds the Sharon B. Murphy, MD and Steven T. Rosen, MD Research Professorship in Cancer Biology & Chemotherapy at Lurie Children’s. The award period for Dr. MacQuarrie’s Early Investigator Award is July 2023–July 2025.

Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute.

Recognizing the 2023 Research Professionals Development Award Recipients

Please join us in congratulating the winners of the Stanley Manne Children’s Research Institute 2023 Research Professionals Development Awards. The individual awardees and team will receive up to $2,000 in financial support for professional development activities. The recipients represent each of the four research pillars and Research Support Services. Thank you to everyone who applied to this year’s awards.  

Ally Byrd 

Clinical Research Coordinator III, Neurology 

Clinical and Community Trials Pillar 

“This award will give me the opportunity to expand my knowledge, make new connections with research professionals, and build on the skills I have acquired thus far at Lurie Children’s. I am excited to use this opportunity to grow in my current position and build a foundation for career advancement in my field.”

Akram Ibrahim, MA 

Behavior Research Coordinator II, Smith Child Health Outcomes, Research and Evaluation Center (SCHORE) 

Community, Population Health, and Outcomes Pillar 

“I am thrilled and deeply grateful to receive this award so that I can use it to further enhance my skills as a researcher. I plan on using the funds to take project management classes through the project management institute and develop skills to achieve better outcomes. I hope that by learning these skills I can contribute even more to this organization.”  

Nathan Mendoza 

Research Technologist, Coates Laboratory 

Basic and Preclinical Science Pillar 

“The Research Professional Award will grant me the financial capabilities to further develop my cell sorting, analysis, and imaging laboratory proficiency as I advance in my journey toward becoming a pediatrics physician-scientist under the mentorship of Dr. Bria Coates. I am eager to immerse myself in translational research at Lurie Children's.”  

Ami Patel, PharmD 

Investigational Drug Service Pharmacist 

Research Support Services 

“The award will provide me with an opportunity to attend the 2023 Research Pharmacy Summit to learn from experts, leaders, and experienced professionals within the research pharmacy field. This conference will help me acquire new knowledge and insights to enhance my expertise and keep me updated with current practices and developments in IDS pharmacy.” 

Diana Bahena, Project Manager 

Wenya Chen, MS, Senior Statistician 

Stella Karuri, MSW, PhD, Lead Statistician 

Ya Tuo, MS, Senior Statistician 

Quantitative Science Pillar 

(Featured clockwise in photo from the top left.) 

“Our team focuses on providing statistical support to researchers across Lurie Children’s. This award serves as an invaluable stepping stone in the team’s career development. Our team intends to use the award for training opportunities to help develop statistical skills that are directly applicable to our current and future roles, thereby benefiting not only our careers but also the researchers we support at Lurie Children’s.” 

NEWS FROM THE RESEARCH PILLARS

Non-Invasive Approach Predicts Retinopathy of Prematurity Earlier

Identifies high-risk patients so all preemies don’t need to undergo invasive eye exams

Research from Ann & Robert H. Lurie Children’s Hospital of Chicago promises to spare many premature infants from undergoing invasive eye exams to detect retinopathy of prematurity (ROP), the most common cause of preventable lifelong blindness in children in the U.S.

ROP is caused by an abnormal development of small blood vessels on the retina. Isabelle De Plaen, MD, and colleagues found that imaging the capillaries in the nailbed of preemies within the first month of life using a non-invasive technique, called nailbed capillaroscopy, can identify infants at high risk for developing ROP. This screening could eliminate the need to evaluate all premature infants with eye exams about a month later. Findings were published in the Journal of Pediatrics.

“Abnormal systemic vascular development starts much earlier than we thought. By measuring the nailbed capillary density soon after birth we can identify premature infants at higher risk for developing ROP long before it is detectable by an eye exam,” said Dr. De Plaen, senior author and neonatologist at Lurie Children’s, as well as Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Earlier identification of these infants reduces the need to subject all premature babies to highly invasive eye exams. Our findings might also lead to the development of earlier preventive or therapeutic interventions for ROP and other complications of prematurity associated with maldevelopment of microvasculature.”

ROP occurs in about 1/500-1/1,000 premature infants. It affects 33%-60% of babies with very low birth weight (less than 1,500g).

Chicago Parent Survey Highlights Inequities in Access to Community Resources

Inequities in access to community resources, such as healthcare clinics, libraries and recreation programs, were found in a recent Voices of Child Health in Chicago Parent Panel Survey from Ann & Robert H. Lurie Children’s Hospital of Chicago. Over 1,000 parents from all 77 community areas in the city were asked about the availability of neighborhood resources and services to help their families.

While overall, parents reported that healthcare clinics were the most available community resource, Black parents reported less access to healthcare clinics (73%) compared to White parents (86%). Also, non-White families, families with lower household incomes and families with lower parental education reported less access to mental health services for youth and adults. 

Similarly, only 71% of Latinx/Hispanic parents and 68% of Black parents reported access to a library, compared to 82% of White parents and 79% of Asian/Other-race parents.

Availability of recreation programs (such as park district programs) also varied by parent demographics, with White parents reporting more access than parents of other races/ethnicities (75% vs. 51%-56%) and parents with higher household income reporting more access than parents with lower household income (73% vs. 48%-53%).

“Availability of community resources can impact the health of an entire family, which is why it is so important to focus efforts on eliminating inequities in access to these services,” said Matthew M. Davis, MD, MAPP, Chair of the Department of Medicine at Lurie Children’s, Executive Vice President and Chief Community Health Transformation Officer at the Patrick M. Magoon Institute for Healthy Communities at Lurie Children’s, and Chair of Pediatrics at Northwestern University Feinberg School of Medicine.

Fathers Key to Supporting Breastfeeding and Safe Infant Sleep

Including fathers in strategies to improve infant health could help narrow disparities

Fathers can make a huge difference in whether an infant is breastfed and placed to sleep safely, according to a recent survey of new fathers via the Pregnancy Risk Assessment Monitoring System (PRAMS) for Dads. This new tool is modeled on the annual surveillance system that the Centers for Disease Control and Prevention (CDC) and public health departments have used for more than 35 years to survey new mothers. By utilizing PRAMS for Dads, this article is the first to describe father-reported rates of infant breastfeeding and sleep practices in a state-representative sample. Findings are published in the journal Pediatrics.

Among fathers who wanted their infant’s mother to breastfeed, 95% reported breastfeeding initiation and 78% reported breastfeeding at eight weeks. This is significantly higher than the rates reported by fathers who had no opinion or did not want their infant’s mother to breastfeed – 69% of these fathers reported breastfeeding initiation and 33% reported breastfeeding at eight weeks.

Researchers also found that 99% of fathers reported placing their infant to sleep, but only 16% implemented all three recommended infant sleep practices (using the back sleep position, an approved sleep surface, and avoiding soft bedding). Almost a third of fathers surveyed were missing at least one key component of safe sleep education.

Black fathers were less likely to use the back sleep position and more likely to use soft bedding than White fathers. Nationally, the rate of sudden unexpected infant death of Black infants is more than twice that of White infants, and unsafe sleep practices may contribute to this disparity.

Lurie Children’s Hospital Engages Parents and PCPs to Increase Early Detection of Cystic Fibrosis

Ann & Robert H. Lurie Children’s Hospital of Chicago received funding from The Legacy of Angels Foundation for a project that aims to increase early detection of cystic fibrosis and improve access to prompt treatment by engaging parents and primary care providers. The Legacy of Angels Foundation focuses on improving children's lives by promoting the expansion of newborn screening and furthering education, awareness, and research of Krabbe disease and cystic fibrosis to provide better treatment and a cure.

Cystic fibrosis is a progressive genetic disease that damages multiple organs, including the lungs and pancreas. The disease is caused by variants in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene that lead to insufficient flow of salt and water in and out of cells. In the lungs, this creates buildup of thick, sticky mucus that can result in chronic lung infections and severe lung disease. Early nutritional deficits are associated with increased respiratory signs and symptoms, lower pulmonary function and childhood mortality.

Newborn screening for cystic fibrosis improves nutrition and survival and has been available throughout the United States since 2010. Pre-symptomatic treatment of cystic fibrosis is the overarching goal of newborn screening. It is recommended that infants who screen positive for cystic fibrosis receive their diagnostic evaluation by 28 days of age. However, many babies, especially those from racial and ethnic minoritized groups, have delays in diagnosis that puts them at risk for severe illness.

“While race is a social construct, CFTR gene variant distribution differs by race and ethnicity, and people with cystic fibrosis from minoritized groups have more rare variants, which can delay diagnostic evaluation,” said Principal Investigator Susanna McColley, MD, pulmonologist at Lurie Children’s and Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Also, medical literature often describes cystic fibrosis as mainly affecting White people, specifically those of northern European ancestry, which may result in bias when interpreting newborn screening results for infants of other racial and ethnic backgrounds, leading to delays in evaluation and initiation of treatment.”

MANNE RESEARCH INSTITUTE IN THE MEDIA

• EMS Crews May Not Always Follow Guidelines When Dosing Kids: Study - U.S. News & World Report
• Editor's Statement: Using Misinformation to Harm LGBTQ People Is Not New - Transgender Health
• Many Children Who Survive Gun Violence Face Barriers to Mental Health Care - PBS News
• Kidney Stones Are Rising Among Children and Teens, Especially Girls, Research Shows - NBC News
• Dads Aren’t Doing Enough to Promote Safe Infant Sleep - Fatherly
• Teens Who Lost Weight After Bariatric Surgery Had Weaker Bones Afterward, Study Says - CNN
• Gender Dysphoria More Prevalent Among Youth With Autism, Study Finds - Healio
• Eyepod: Detecting ROP Earlier in a Non-invasive Way - Opthamology Times Podcast
• Weighing Childhood Obesity Interventions - Medscape
• Why Symptoms of Iron Deficiency Are Often Missed in Young Women and Girls - NBC News
• Food Allergy Rate Is Highest Among Hispanic, Black and Asian Individuals - Northwestern Now