Have an update to share? Research news, milestones, funding announcements, and events can be submitted via the Research Communications request form. In addition to the monthly newsletter, Manne Research Institute distributes a bi-weekly "Events and Opportunities" email featuring upcoming events, including virtual and in-person educational opportunities, and relevant research deadlines. All previous updates can be found in the Research Communications archive.

In this Stanley Manne Children's Research Institute President's Message, Dr. Patrick Seed highlights Innovate2Impact, a program designed to harnesses the potential of the "inner innovators" across our communities of research and medical practice. Under the direction of Kaushik (Kosh) Ghosh, Innovate2Impact cultivates inventive thinking into partnerships between the healthcare industry and academia, building our capacity for improved medical care and better health outcomes for kids and families.

Manne Research Institute welcomes Brenda Paulsen, MEd, FACHE, as Chief Operating Officer as of October 31. Brenda brings more than 30 years of leadership experience in academic, medical, and research administration to Manne Research Institute, including facilitating partnerships with internal stakeholders to support organizational missions. Most recently, she served as the Senior Vice President of Physician Administration at Children’s Health System of Texas, where she provided executive leadership to the Joint Pediatric Enterprise framework in partnership with University of Texas Southwestern.

In her role as COO, Brenda is responsible for Manne Research Institute administration in support of the multidisciplinary work to advance pediatric medicine. Working collaboratively with senior leaders across the research institute, the Medical Center, and Northwestern University Feinberg School of Medicine, Brenda ensures the delivery of exceptional financial management and cross-system flexibility to further new and existing research.

Michelle Corbett has been named Interim Director for the Office of Research Development. Michelle has previously led both the Research Education and Navigation teams within ORD, focusing on the cultivation and alignment of resources, orientation and onboarding, and identification of the research needs and gaps faced by research faculty and staff. Michelle will employ her talents and experience in research development to further the progress of ORD. Learn more here.

Erin Kohnke recently joined the Office of Research Integrity and Compliance as a Research Compliance Coordinator. Kohnke previously worked at Massachusetts General Hospital where she studied sleep using EEG and MRI. She has also worked in the press offices of Cell Press, Brigham and Women's Hospital, and most recently, the Alzheimer’s Association. She received a BS in Neuroscience from University of Illinois at Chicago and an MS in Science Journalism from Boston University.

The NUCATS Institute has partnered with top Chicagoland universities and hospitals on a research participant matching platform for publicly recruiting clinical studies. With support from NUCATS, Northwestern-affiliated study teams can input research studies into The New Normal Match recruitment portal. The web-based platform uses lay-friendly language and allows for users to express interest and match with research studies based on a study's inclusion and exclusion criteria.

The Family and Child Health Innovations Program (FCHIP) Different Approaches to Data (DAD) Pilot Funding encourages researchers to expand their work beyond a maternal-child or dyadic focus and to begin to collect pilot data that allows for a more holistic and contemporary view of families. These Pilot funds can be used to expand research to include fathers (or partners) in creative ways. For the second round of DAD Pilot funding, FCHIP is pleased to announce the winners for 2022: Kerri Machut, MD, Jessica Fry, MD, and Susan Horner, PhD, APN. View PDF here.

Problem: Families with critically ill infants in the Neonatal Intensive Care Unit (NICU) endure great amounts of stress. Growing research supports a family-centered care approach to optimize outcomes for both infants and their families.

Approach: Through previous work with the Lurie Children's NICU, parents identified areas for improvement in local family support. We propose that parent experiences of support and engagement are tied to the local family-centered care culture. We aim to prospectively survey parents regarding family-centered care both during and after their NICU experiences.

Significance: Our study will help define family perceptions of the culture of family-centered care present within the Ann & Robert H. Lurie Children’s Hospital NICU and to determine if family perceptions on family-centered care are correlated with infant clinical factors, family demographic factors, and family-reported usage of digital health tools.

Problem: The presence of mothers and fathers in the NICU is essential to supporting the establishment of parent-infant relationships, however, parental presence in the NICU is highly variable. The NICU is a high paced and challenging environment for parents. NICU parents are impacted by multiple stressors, including maintaining employment and caring for other children. This may impact their presence in the NICU.

Approach: This study will employ a retrospective chart review to extend an existing dataset that includes measures of parental presence for 78 NICU families to examine associations between parents’ sociodemographic variables, their social vulnerability at the community level, and their presence in the NICU. Results of the study may be useful in identifying individual and community-level barriers to parental presence.

Significance: This study will expand knowledge of NICU parent presence by employing the use of the CDC's Social Vulnerability Index (SVI) to bring light to community-level vulnerabilities that may impact parents’ presence in the NICU.

The editors of World Neurosurgery recently awarded "Editor's Choice" status to a publication co-authored by Sandi Lam, MD, MBA, Head of the Division of Neurosurgery and David G. McLone, MD, PhD Professorship in Pediatric Neurosurgery at Ann & Robert H. Lurie Children’s Hospital of Chicago.

The journal’s editors judged the study, “Health Literacy in Neurosurgery: A Scoping Review,” as important, relevant, and timely for scientific and socioeconomic issues important to neurosurgery and healthcare delivery. “This scoping review study on health literacy sets the stage for the field of neurosurgery. It is not enough for us to offer advanced surgeries and great outcomes. We need to be able to reach more children and offer appropriate care for all. This work builds on my line of research in disparities in access to care for pediatric neurosurgery and in my larger Patient-Centered Outcomes Research Institute grant for epilepsy surgery and rare diseases. I am so glad that people are taking notice of this important issue,” said Dr. Lam, the study's senior author.

The researchers conducted a scoping review of 57 articles discussing personal health literacy and organizational health literacy to determine the extent of health literacy in neurosurgery. The analysis showed that patient recall after discussions with neurosurgeons is low and that patients’ perspectives of these discussions is often erroneous. The researchers also found that patient informational needs are frequently unmet and point to written patient educational materials that are often too complex for the average patient to understand and videos are mostly of poor quality. They propose increasing awareness of health literacy among neurosurgeons, assessing health literacy, and incorporating health literacy-informed counseling approaches as ways to potentially improve patient care.

Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute. Dr. Lam is Professor in the Department of Neurosurgery, Northwestern University Feinberg School of Medicine, where she works to mentor the next generation of healthcare leaders.

The Agency for Healthcare Research and Quality recently awarded Emilie K. Johnson, MD, MPH, Attending Physician, Urology, at Ann & Robert H. Lurie Children’s Hospital of Chicago, an R18 grant. The 4-year, $1.6 million grant will fund research on newborn circumcision care redesign. The Co-Investigators from Lurie Children’s are Catherine Seager, MD, Attending Physician, Urology, Derek Matoka, MD, Attending Physician, Urology, and Max Maizels, MD, Attending Physician, Urology.

Kathryn Cherny, PhD, Postdoctoral Associate in the Kociolek Laboratory, was recently selected to the Northwestern University’s Innovation and New Ventures Office (INVO) practicum internship. Dr. Cherny will learn about the technology transfer process and gain hands-on experience in evaluating technologies for patentability, marketability, and commercialization readiness as a participant in the program, which began in mid-October.

“Dr. Cherny is an outstanding scientist and colleague, and she has been integral in advancing our research program,” said Larry Kociolek, MD, MSCI, Attending Physician, Infectious Diseases, at Ann & Robert H. Lurie Children’s Hospital of Chicago. “She joined my lab in 2019 and had prior experience in scientific entrepreneurship at that time. Her interactions with INVO through our lab’s work have rekindled her interest in this exciting career path, and I am thrilled that she will be able to gain this invaluable experience through the INVO internship.”

The Kociolek Laboratory focuses on clinical and molecular epidemiology, diagnosis, and the host immune response to Clostridioides difficile and other emerging pathogens, such as SARS-CoV-2 and Clostridium innocuum. Dr. Cherny’s research efforts have been on molecular microbiology biology, investigating C. innocuum as a potential gastrointestinal pathogen. This project led to several publications, including identifying a novel protein and evidence that this microorganism is far more prevalent than previously described.

Dr. Cherny first became interested in technology transfer, entrepreneurship, and STEM commercialization as a graduate student at Binghamton University where she participated in the NSF I-Corps program, which takes academic researchers with translation STEM innovations through potential paths to commercialization. “I applied to the INVO practicum because one of the most incredible aspects of research is the boarder impact it can have on shaping our lives and society,” she said. “In the future, having experiences in academic research and invention management will give me a unique understanding of the process of bringing bench research to the bedside.”

The INVO practicum is an unpaid eight-month internship program open to anyone enrolled at Northwestern University, including postdocs and research faculty, who have comprehensive technical knowledge in a scientific field and an interest in intellectual property and commercialization. “Our collaboration with Northwestern University’s INVO is very important to the Education Pillar of our Innovate 2 Impact program, and I am pleased that Dr. Cherny will have the chance to share her knowledge of important innovation topics with other innovators at Stanley Manne Children’s Research Institute in the future,” said Kosh Ghosh, Director of the Innovate2Impact Program.

A device known as a bionic pancreas, which uses next-generation technology to automatically deliver insulin, was more effective at maintaining blood glucose (sugar) levels within normal range than standard-of-care management among people with type 1 diabetes, a new multicenter clinical trial has found. The trial was primarily funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health, and published in the New England Journal of Medicine.

Automated insulin delivery systems, also called artificial pancreas or closed-loop control systems, track a person’s blood glucose levels using a continuous glucose monitor and automatically deliver the hormone insulin when needed using an insulin pump. These systems replace reliance on testing glucose level by fingerstick, continuous glucose monitor with separate insulin delivery through multiple daily injections, or a pump without automation.

Compared to other available artificial pancreas technologies, the bionic pancreas requires less user input and provides more automation because the device’s algorithms continually adjust insulin doses automatically based on users’ needs. Users initialize the bionic pancreas by entering their body weight into the device’s dosing software at the time of first use.

Users of the bionic pancreas also do not have to count carbohydrates, nor initiate doses of insulin to correct for high blood glucose. In addition, health care providers do not need to make periodic adjustments to the settings of the device.

“Among the children, teens and parents participating in this study, youth showed statistically and clinically meaningful improvements in their time spent in target blood glucose range, even though there was no need to count carbohydrates, calculate basal insulin dosing or correct high glucose levels,” said study co-author Jill Weissberg-Benchell, PhD, CDCES, pediatric psychologist at Ann & Robert H. Lurie Children’s Hospital of Chicago and Professor of Psychiatry and Behavioral Sciences at Northwestern University Feinberg School of Medicine. “This novel insulin delivery system likely decreases both the emotional and cognitive burden of diabetes management for both youth and parents living with type 1 diabetes.” Read more...

When a child with RSV requires intensive care, parents often ask about how long it will take before their child can go home. Currently, there is no reliable way to answer this question. Results of a new study from Ann & Robert H. Lurie Children’s Hospital of Chicago, however, offer important insights.

Researchers used nose swabs from children with RSV in the pediatric intensive care unit (PICU) within a few days of hospital stay to examine what genes turn on in response to the virus. They found that despite the same quantity of RSV and the same clinical presentation, some children had signs of greater damage to the cells lining the nose, and this correlated to longer PICU stays.

“We were excited to find that the severity of a child’s illness related to the different sets of genes turned on in their body’s response to RSV,” said senior author Bria Coates, MD, Critical Care physician at Lurie Children’s and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “The ability to identify which infants with RSV in intensive care will recover quickly and which patients will require a longer stay would provide invaluable information to parents and medical providers.”

Results were published in the journal Frontiers in Immunology. Read more...

Research Brief: Scoping Review Recommends Steps to Optimize Education Programs for Parents of Children Assisted by IMV  

A new scoping review study published in Journal of Pediatric Nursing identified common characteristics and outcome measures of parent education programs and revealed results that may assist nurses and healthcare providers as they design, implement, and evaluate programs to educate parents of children assisted by invasive mechanical ventilation (IMV).

The number of children assisted by IMV and living at home is increasing. These children require specialized medical equipment and specific types of care. In the past, children assisted by IMV primarily had to live in hospitals or long-term care settings. Today, they can safely transition from the hospital to the home with guidance provided through parent education programs. These programs are essential to ensure safe transitions from the hospital to the home, but little is known about how this education is delivered.

Three researchers from Ann & Robert H. Lurie Children’s Hospital of Chicago contributed to the scoping review: Michelle S. High, MSN, RN, CNL, CPN, Registered Nurse III (Inpatient), Sarah Heigel, MSN, RN, CNL, Registered Nurse I (Ambulatory), and Andrea Fawcett, MLIS, Reference and Clinical Services Librarian. High and Fawcett are also part of Lurie Children’s Pediatric Research & Evidence Synthesis Center (PRECIISE): A JBI Affiliated Group. Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute.

High MS, Julion W, Heigel, S, Fawcett A, Sobotka SA. Parent Education Programs for Children Assisted by Invasive Mechanical Ventilation: A Scoping Review. Journal of Pediatric Nursing. 2022; 66: 160–170. Epub July 4. doi: 10.1016/j.pedn.2022.06.009

Medicaid eligibility and coverage for children with medical complexity vary substantially by state, which gives rise to health equity concerns, especially if families move across state lines, according to a study from Ann & Robert H. Lurie Children’s Hospital of Chicago published in the journal JAMA Network Open. The study focused on Medicaid programs for these children beyond the traditional family income-based eligibility.

“State-by-state differences in Medicaid eligibility and coverage influence access to services for children with medical complexity, which may lead to delays in care, impacting these children’s health outcomes,” said lead author Jennifer Kusma, MD, MS, a pediatrician at Lurie Children’s and Instructor of Pediatrics at Northwestern University Feinberg School of Medicine.

Matthew Davis, MD, MAPP, and Carolyn Foster, MD, MSHS, both from Lurie Children’s, are co-authors on the study. Read more...

News release source: UC San Francisco (UCSF) Health—Cystic fibrosis is missed more often in newborn screenings for non-white than white babies, creating higher risk for irreversible lung damage and other serious outcomes in Black, Hispanic, Asian, American Indian and Alaska Native newborns, according to a new study. Susanna McColley, MD, Pulmonary Medicine physician at Ann & Robert H. Lurie Children’s Hospital of Chicago and professor of pediatrics at Northwestern University Feinberg School of Medicine, served as senior author.

The genetic panels used in newborn screening programs vary by state, but most tend to test for cystic fibrosis gene mutations that are common in white populations while excluding mutations more common in non-white populations, said Meghan McGarry, MD, associate professor of pediatrics at UC San Francisco (UCSF) Benioff Children’s Hospitals and first author of the study, published in Pediatric Pulmonology.

“Newborn screenings are meant to be a public health measure that is equal across populations, but in practice, we are actually creating disparities because children of color are going undiagnosed for cystic fibrosis until an older age,” McGarry said. “That means they are treated later when symptoms occur, and their outcomes are often worse.”

Cystic fibrosis is one of the most common genetic disorders, with about 1,000 new cases diagnosed each year. The disease causes the malfunction of a protein that helps regulate mucus, which can lead to blockages and trapped germs and eventually, infections such as bronchitis and pneumonia. Early diagnosis and treatment can reduce severe symptoms, such as failure to thrive, and is associated with improved nutrition, better pulmonary outcomes, and survival. Read more...

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