August 20, 2024

The Powerful Reach of Our Legislative Advocacy

Researchers at Manne Research Institute are at the forefront of advancing our understanding of pediatric conditions and diseases through groundbreaking discoveries in basic science, translational research, clinical studies, and population research. Beyond their work in the lab, our researchers play a pivotal role in shaping healthcare policy by bringing their expertise and data to the attention of legislators and policymakers. This crucial advocacy is made possible through the strong collaboration with Lurie Children’s government relations team led by Susan Hayes Gordon, Senior Vice President and Chief External Affairs Officer, and Jill Fraggos, MPH, Vice President. Their efforts are instrumental in ensuring that science and evidence-based data drive legislative decisions impacting children’s healthcare and well-being, solidifying the partnership between government affairs and the research institute as a force for advocacy. 

Genetic testing has been transformative in many areas of pediatrics, such as diagnosing rare conditions and syndromes. But in other cases, such as the processing of immigrants at the border or of children separated from families during war, genetic testing and the collection of biometric data in children can lead to an overreach of the government or law enforcement in criminal or humanitarian cases. Sara Huston, MS, Principal Investigator of the Genetics and Justice Laboratory in the Smith Child Health Outcomes, Research and Evaluation Center, housed within Stanley Manne Children's Research Institute, is an expert in genetic testing and the legal and ethical questions that often arise with its application in medicine and law enforcement. In this episode she discusses her research and current events where genetic testing could potentially help or harm families.

SCIENCE SHOWCASE

David Ramirez Receives $90,000 Grant from Knights Templar Eye Foundation, Inc.

David Ramirez, MD, an attending physician of ophthalmology at Ann & Robert H. Lurie Children’s Hospital of Chicago, received a $90,000 grant from the Knights Templar Eye Foundation, Inc., for his research on the socioeconomic impact on treatment of anisometropic, refractive amblyopia.  

Amblyopia is a condition where visual development during infancy and childhood is interrupted such that without intervention it can lead to permanent vision loss. This condition affects 2–4 percent of children. Recent studies have found that race, insurance type, and economic background are associated with worse outcomes even with standard treatments. Dr. Ramirez’s project aims to investigate the socioeconomic factors that put children at risk for worse outcomes by expanding the understanding of the whole patient.

Alexander Kula Receives Young Investigator Research Grant

Alexander Kula, MD, MHS, an attending physician in nephrology at Ann & Robert H. Lurie Children’s Hospital of Chicago and an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine, received the Young Investigator Research Grant from the National Kidney Foundation of Illinois. The grant, with a total funding of $120,000 (award period July 2024–July 2026), will support work to expand an emerging collaboration to improve the understanding of cardiorenal complications associated with kidney disease. 

Meet Aria Mallare, Katz and Manne Research Institute Summer Scholar

Each summer Stanley Manne Children’s Research Institute welcomes a group of undergraduates to participate in the Katz and Manne Research Institute Summer Scholars Program, engaging them in research related to childhood health and disease. This year, nine students are spending eight weeks working daily with their faculty mentors and research teams to learn how to conduct scientific research and acquire practical research experience. We introduce you to one of these talented summer scholars, Aria Mallare, an aspiring pediatrician with a love of learning and a passion for ensuring all children are set up for success. 

NEWS FROM THE RESEARCH PILLARS

Andrea Spencer, MD, from Ann & Robert H. Lurie Children’s Hospital of Chicago, received a $3.8 million, five-year grant from the National Institute of Mental Health to investigate the intersection of racism and ADHD in driving increased suicidality in young Black children (6-11 years of age). The study also aims to identify protective factors that lower the risk of suicide in these kids, and inform new guidelines on suicide prevention and risk reduction.

Over the past two decades, suicide rates have been rising among school-age Black children, despite decreasing rates among White children of the same age. Black school-age children report suicidal thoughts and behavior more frequently than their White peers and are twice as likely to die from suicide. ADHD is more common than depression in this age group and it is the leading risk factor for suicidality in pre-adolescents.

A new report on cystic fibrosis (CF) from Ann & Robert H. Lurie Children’s Hospital of Chicago, in partnership with the Cystic Fibrosis Foundation and funded by the Centers for Disease Control and Prevention (CDC), highlights the need to improve awareness and practice to ensure that all babies with CF are diagnosed as soon as possible. Earlier CF diagnosis is associated with better outcomes, according to the research cited in the report.

CF is a genetic disease that affects breathing and digestion, impacting about 40,000 children and adults in the United States. It occurs in people from all backgrounds and ancestries. When CF was first described in 1938, it was usually fatal in early life. Thanks to improvements in diagnosis and treatment, the median predicted survival is 61 years of age among people with CF born between 2019 and 2023.

Three out of five youth who died by suicide in the U.S. did not have a prior mental health diagnosis, signaling missed opportunities to identify children and adolescents for suicide prevention strategies, including therapy or medications to treat depression. This finding comes from an analysis of over 40,000 suicides by youth of 10-24 years of age from 2010 to 2021, recorded in the Centers for Disease Control and Prevention National Violent Death Reporting System. Results were published in the journal JAMA Network Open.

“We discovered that certain youth who died by suicide were less likely to have a documented mental health diagnosis, including those who used firearms, were of minoritized race or ethnicity, males, and children younger than 14 years of age,” said co-author Jennifer Hoffmann, MD, MS, emergency medicine physician at Ann & Robert H. Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Our findings point to the critical need to increase equitable access to mental health screening, diagnosis, and treatment for all youth.”

A study of over 15,000 youth with self-inflicted injury treated in Emergency Departments (EDs) found that around 25 percent were seen in the ED within 90 days before or 90 days after injury, pointing to an opportunity for ED-based interventions, such as suicide risk screening, safety planning, and linkage to services. Nearly half of ED visits after the self-inflicted injury encounter were for mental health issues.

“Self-inflicted injury is an important predictor of suicide risk,” said Samaa Kemal, MD, MPH, emergency medicine physician at Ann & Robert H. Lurie Children’s Hospital of Chicago, who was the lead author on the study published in JAMA Network Open. “Our study suggests that Emergency Departments could have life-saving impact if they treat youth not only in the moment of crisis but intervene to extend care into the future. It would be critical to screen for suicide risk, talk to families about removing from the home or locking up anything that could be lethal to their child, like guns, and connect patients to follow-up care.”

Ann & Robert H. Lurie Children’s Hospital of Chicago, in partnership with University of Utah Health, has been approved for $12 million in research funding by the Patient-Centered Outcomes Research Institute (PCORI) for a study that will compare two ways to use antibiotics in young children with mild pneumonia, one of the leading reasons children seek acute care, who are well enough to be cared for at home.

The first approach is to prescribe and give antibiotics immediately, which is the current standard of care. The second way is to prescribe an antibiotic but not give it unless the child’s symptoms worsen or do not improve within three days, an approach that is known as a Safety-Net Antibiotic Prescription (SNAP). The study aims to determine whether SNAP, compared to immediate prescribing, results in decreased antibiotic use and similar clinical improvement in children with mild pneumonia.

Adolescents with severe obesity who received meal-replacement therapy plus financial incentives experienced a greater reduction in body mass index compared to those who received meal replacement therapy alone, according to recent findings published in JAMA Pediatrics.  

Justin Ryder, PhD, Vice Chair of Research for the Department of Surgery at Ann & Robert H. Lurie Children's Hospital of Chicago and Associate Professor of Surgery and Pediatrics at Northwestern University Feinberg School of Medicine, was a co-author of the study.

Severe obesity currently affects about one in five children and adolescents in the U.S., according to the Centers for Disease Control and Prevention, and is defined as having a body mass index, or BMI, either at or above the 95th percentile for age and sex. The condition is associated with an increased risk of adult obesity, cardiovascular disease, type 2 diabetes and other conditions.  

MANNE RESEARCH INSTITUTE IN THE NEWS

• ER Intervention Could Help Reduce Youth Suicide Risk - Crain's Chicago Business
• Our Chicago: Online Safety for Children - ABC 7 Chicago
• Most Young People Who Die by Suicide in the US Do Not Have Previous Mental Health Diagnoses, Study Suggests - CNN
• Chicago’s Lurie Children’s Hospital Secures $12M to Study Antibiotic Use in Treating Pediatric Pneumonia - FOX 32 Chicago
• Lurie Children’s Hospital Studying Impact of Activism on Teens’ Mental Health - ABC 7 Chicago
• Researchers to Study Delayed Antibiotic Strategy for Kids With Mild Pneumonia - University of Minnesota CIDRAP
• Mental Health Emergency Visits Declined — And Stayed Down — For Illinois Youth Post-Covid Lockdown - Northwestern Now
• Investigators Discover New Therapeutic Target for Pediatric Brain Cancers - Northwestern Medicine News Center
• Many Youth Suicides Occur Without a Prior Mental Health Diagnosis, Study Shows - Crain's Chicago Business
• Lung Disease Is Focus of New NIH Grant - Northwestern Medicine News Center

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