September 2022
IN THIS NEWSLETTER
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.
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UPDATES FROM RESEARCH ADMINISTRATION
Office of President and Chief Research Officer
Marking a New Academic Year and Steps Forward in Our Research Journeys

On the cusp of a new academic year, Manne Research Institute President and Chief Research Officer Patrick Seed, MD, PhD, FIDSA, celebrates our collective steps forward in our research and academic journeys by checking in on the progression of three of the research institute's burgeoning young scientists.
Office of Sponsored Programs
Reminder: Grants.gov Migration and Downtime

The Grants.gov website will migrate its systems and data to the cloud and therefore will be unavailable from September 23, at 12:01 a.m. ET to September 29, at 11:59 p.m. ET. For details on the migration read the recent communication from the NIH.
Office of Clinical and Community Trials
Reducing Interruptive Best Practice Advisory Alerts for Research 
In alignment with efforts at Ann & Robert H. Lurie Children’s Hospital of Chicago to reduce unnecessary pop-up (interruptive) alerts in Epic, we are proposing to turn off the interruptive alert features of the current “FYI Research Study” alert by October 1.

Signing up for this alert will continue to trigger a passive message in the “Patient Advisory” sidebar. Functionality exists to send in-basket alerts to study teams. Any research study that requires an interruptive alert to clinical teams in Epic to avoid significant consequences will be eligible for evaluation for an appropriately targeted custom alert to address the issue.

Please review this presentation for more information and provide feedback to Allan Wu.
Updates from Research Partners
NUCATS Launches Service Request Form 
NUCATS presents its new Service Request Form to enhance accessibility to a variety of research resources, including:

  • NUCATS membership  
  • Clinical research support (e.g., regulatory, finance, recruitment, and multi-center study support)  
  • REDCap support and training  
  • NMEDW access  
  • Education and career development event registrations  
  • Community engagement resources  
  • Grant development support (including studios)  
  • Letters of Support for grant submissions  
  • Access to the Comprehensive Facilities and Other Resources document  
  • General inquiries, feedback, and suggestions  

The new Service Request Form can also be found on the NUCATS website under the “Need Help?” section.
Research Institute Additions and Promotions
Marla L. Byrd, MBA, MPA
Research Financial Portfolio Manager, Sponsored Research Finance Office  

Marla L. Byrd recently joined the Sponsored Research Finance Office as a Research Financial Portfolio Manager. Byrd has more than eight years of grants and contracts management experience and more than 20 years of accounting experience. Prior to joining Lurie Children’s, Byrd worked at the Illinois Department of Children and Family Services, Rush University Medical Center, and the Gateway Foundation. She also worked in the Chicago radio industry. She has a Master of Public Administration with a concentration in Healthcare Management and a Master of Business Administration in Finance.
Sam Engel, PhD 
Research Scientist Navigator for Clinical and Community Trials, Office of Research Development 

The Office of Research Development has named Sam Engel as Research Scientist Navigator for Clinical and Community Trials. A research professional and teacher with expertise in language and communication, Engel has worked with children who have experienced perinatal stroke, have developmental language impairment, and are on the autism spectrum. Prior to joining Lurie Children’s, Engel managed clinical trials for adult stroke survivors diagnosed with aphasia. She earned her PhD in Language and Communicative Disorders at the University of San Diego, California, and a BA in Cognitive Science at Johns Hopkins University.
Stella Karuri, PhD
Lead Statistician, Quantitative Science Pillar 

Stella Karuri joins the Quantitative Science Pillar as Lead Statistician. She is a biostatistician with more than 16 years of experience in clinical trials, experiment design, Bayesian analysis, estimation, and linear models. Prior to joining Lurie Children’s, Karuri worked for the U.S. Food and Drug Administration (FDA) as a mathematical statistician.

In 2005, Karuri earned a PhD in Statistics from the University of Waterloo. Her dissertation focused on improving estimation in Bayesian analysis and computer experiments. After graduation, she joined the statistics department at North Carolina State University where she continued her doctoral research, and later she joined Insightful Corporation as a researcher where she helped to develop software modules for the statistical package Splus. Next, Karuri joined the National Cancer Institute (NCI) at the National Institutes of Health where she gained training in biostatistics and clinical trials as a postdoctoral fellow under the mentorship of Dr. Richard Simon. While at NCI, she worked on developing Bayesian clinical trials designs for targeted oncology treatments. This experience led her to accept a position as a mathematical statistician at FDA in 2012. Her work involved reviewing clinical study submissions for marketing approvals for oncology drugs in humans and companion animals. Throughout her career, Karuri has collaborated with scientists from various fields and has published collaborative research studies in statistical, medical, and engineering journals.
Cecilia Nguyen
Grants Staff Accountant, Sponsored Research Finance Office 

The Sponsored Research Finance Office welcomes Cecilia Nguyen to the role of Grants Staff Accountant. Prior to joining Lurie Children’s, Nguyen worked in accounts receivable and credit and collections at two different manufacturing companies: a medical manufacturer and an aerospace/defense manufacturer. She received a bachelor’s degree in Business Administration from SUNY Geneseo in May 2020.
SCIENCE SHOWCASE
Division of Pediatric Autonomic Medicine Team Receives NIH R03 Grant Award 
The National Center For Advancing Translational Sciences of the National Institutes of Health recently awarded an R03 grant to a team led by Debra E. Weese-Mayer, MD, Chief of the Division of Pediatric Autonomic Medicine at Ann & Robert H. Lurie Children’s Hospital of Chicago. The $150,000 grant will fund the study “PHOX2B Congenital Central Hypoventilation Syndrome (CCHS) Physiologic Signatures in Readiness for Future Clinical Trials.” This is the first-ever NIH clinical grant to fund a clinical/translational study on Congenital Central Hypoventilation Syndrome (CCHS), according to Dr. Weese-Mayer.

CCHS causes severe autonomic nervous system dysfunction including a life-threatening inability to regulate breathing and oxygen levels. While no cures and limited treatment currently exist for this rare and complex condition, recent advances in biotechnology and an understanding of the molecular underpinnings of CCHS have advanced potential for near-term clinical trials that could advance treatment and reduce morbidity and mortality for these patients. Dr. Narayanan Krishnamurthi, a Co-Investigator and Physiologic Data Scientist in Autonomic Medicine, will lead the analysis of longitudinal comprehensive physiologic data captured in nearly 100 patients at Lurie Children’s, the world’s largest referral center for CCHS. The goal is to validate biomarkers of disease stability and progression that can be captured in the home setting. The team hopes these biomarkers will empower future clinical trials and FDA approval for these treatments. In addition to Dr. Weese-Mayer and Dr. Krishnamurthi, the Autonomic Medicine team studying CCHS includes Casey M. Rand, Allaa Fadl-Alla, Erin Lonergan, Tracey Stewart, Beth Lappin, Tara Chung, Katherine Reed, Cindy Brogadir, Dr. Susan Slattery, and Dr. Ilya Khaytin. Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute.
2022 Katz Summer Scholars Take Center Stage at Poster Symposium
Stanley Manne Children’s Research Institute celebrated the Katz and Manne Research Institute Summer Scholars at a poster symposium held on August 7. The program annually provides undergraduates summer experiences in research related to childhood health and disease through the ongoing generosity of the Robert Louis Katz Medical Research Foundation and the Manne Research Institute. The symposium is the students’ opportunity to showcase their hard work over the summer and to gain experience presenting to a scientific audience. The 2022 program participants and their Manne Research Institute faculty mentors are highlighted in our program book. To learn more about the program, click here.
Research Brief: Study Advances Insights into Kidney Regeneration
The stroma of the kidney, which is known to cradle the entire organ, is playing an essential role in the normal development and function of the renal system, including formation of blood vessels and other kidney structures, according to new research published in Kidney360.

Key Takeaways 

  • Coordinated interactions between multiple cell types is required for kidney formation; previous research by the laboratory of Gal Finer reported that Transcription Factor 21 (Tcf21) is required for ureteric bud branching. 
  • In this current study, the researchers used the Foxd1Cre;Tcf21f/f mouse kidney for morphological analysis and the clonal mesenchymal cells MK3/M15 to study Tcf21 interaction with Wnt/β-catenin. 
  • Tcf21 regulates kidney cell proliferation and differentiation and is essential for the formation of the stroma in-utero. 
  • Tcf21 needs to combine with the Wnt/β-catenin protein for normal formation of other kidney structures such as nephrons that filter the blood. 

The lead author of the study is Gal Finer, MD, PhD, Attending Physician, Nephrology (Kidney Diseases), at Ann & Robert H. Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics (Nephrology) at Northwestern University Feinberg School of Medicine. Dr. Finer’s research has evolved from simply observing what kidney cells do to identifying the reasons and mechanisms behind cell behavior, something that is essential to identifying targets for therapies. This work by Dr. Finer advances the field of regeneration nephrology and adds to the scientific effort by other laboratories that focus on the complexities of kidney renewal. Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute.

Article Citation

Finer G, Maezawa Y, Ide S, Onay, T, Souma T, Scott R, Liang X, Zhao X, Gadhvi G, Winter D, Quaggin S, Hayashida T. Stromal Transcription Factor 21 Regulates Development of the Renal Stroma via Interaction with Wnt/β-Catenin Signaling. Kidney360. 2022; 3(7): 1228–1241. doi: 10.34067/KID.0005572021
Research Brief: Assessing Pain Quality After Nuss Procedure 
A new study published in Pain Management Nursing is the first of its kind to investigate pain intensity, quality, number of sites, and surface area of pain before surgery, during postoperative hospitalization, and up to 14 months after adolescents’ elective Nuss procedure. Nuss procedure is the gold standard for treating pectus excavatum, the most common congenital anterior chest wall deformity. The findings provide important information to help nurses interpret pain quality descriptors and guide them in postoperative pain treatment.

Key Takeaways 

  • Postoperative pain quality, intensity, number of sites, and surface area decreased over time. 
  • Word clouds depicted frequency and variance of qualitative pain descriptors of pain and compared descriptors and variance over time. The word clouds generated in the study illustrated that pain quality descriptions differed over time; neuropathic sensory and temporal pain quality descriptors increased in frequency 2–6 weeks after surgery, and these were the predominant descriptors 2–4 months after surgery. 
  • “Sore,” “tight,” “aching,” and “stiff” were the most frequently used sensory pain quality descriptors; “uncomfortable,” “annoying,” and “bad” were the most frequently reported evaluative pain quality descriptors; and “comes and goes,” “off and on,” “steady,” and “constant” were the most frequently reported temporal pain quality descriptors. 
  • Dot matrix charts depicted the relationship of pain quality descriptors and pain intensity and body outline diagram surface area, and showed an inconsistent relationship of pain quality and intensity with pain surface area. 
  • The adolescent pediatric pain tool successfully captures pain intensity, quality descriptors, sites, and surface area, but the current methods for scoring and analyzing these do not provide differentiation of nociceptive pain and neuropathic pain to guide treatment. The visual analytics used in this study to evaluate pain quality showed the ability to distinguish between the two types of pain after surgery.  

The study was conducted by lead author Renee C.B. Manworren, PhD, APRN, Pediatric Clinical Nurse Specialist, Anesthesiology and Posy and Fred Love Chair in Nursing Research at Ann & Robert H. Lurie Children’s Hospital of Chicago; Maria Victoria Di Franco, a 2020 summer research student at Lurie Children’s and an undergraduate student at University of Illinois Urbana–Champaign; and collaborators at KaviGlobal. Pediatric research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute.

Article Citation 

Manworren RCB, Di Franco MV, Mishra T, Kaduwela N. Pain Quality After Pediatric Pectus Excavatum Repair. Pain Management Nursing. 2022 Aug. 1 (Epub ahead of print). doi: 10.1016/j.pmn.2022.06.005
Study: Tonsil/Adenoid Removal, Appendectomy Account for Most Post-Surgery Pediatric ED Visits

Just six pediatric procedures from two pediatric subspecialties accounted for most post-surgery hospital and emergency department (ED) visits in a comprehensive analysis led by researchers at Ann & Robert H. Lurie Children’s Hospital of Chicago. The study was published online in August in JAMA (the Journal of the American Medical Association.) 

The six otolaryngology and general pediatric surgery procedures — tonsillectomy/adenoidectomy, appendectomy, central venous catheter (CVC)/port insertion, gastrostomy, myringotomy/tympanostomy (ear tube insertion) and circumcision — accounted for 68% of 88,796 revisits to the hospital within 30 days of discharge following surgery. Tonsillectomy/adenoidectomy had the highest number of revisits total – 18,279 revisits out of 88,796. Meanwhile, CVC/port insertion has the highest revisit rate, with 41%.

The study authors, including Fizan Abdullah, MD, Division Head of Pediatric Surgery at Lurie Children’s, used data from the Pediatric Health Information System (PHIS) to analyze more than 1 million procedures across 9 surgical subspecialties performed at 52 children’s hospitals nationwide. The study uses recent data from January 2016 – January 2020.

"We wanted to identify surgeries at high risk for revisits so that strategies for avoiding the emergency room and improving outcomes can be implemented,” Dr. Abdullah said.

Additionally, pediatric hospitals are likely to face penalties when patients revisit the hospital for unscheduled care following procedures, similar to what adult hospitals currently face. This research may help institutions examine where they can improve processes and safety/quality control efforts to avoid those fines.

“Our study results are also important in that we already know that revisits after children’s surgery take a tremendous financial toll on the health system,” said study co-author and health economist Dr. Hassan Ghomrawi. “The high levels of revisit rates in just a few procedures present a tremendous opportunity to change how we do the business of children’s surgery.”

Previous similar analyses were performed using older data that point to the same list of procedures, researchers said.

“Despite improvements in care, this study shows that we may have reached a plateau in how we can manage postoperative care using current strategies,” Dr. Ghomrawi said.

Added Dr. Abdullah, “The current paradigm of postoperative care needs to fundamentally change, providing the clinical team insights into the patient’s recovery beyond hospital discharge. Remote monitoring of patients postoperatively anticipates complications and the need for care and has proven to reduce ED visits and revisits. This technology has been used on a small proportion of patients, but with the explosion of digital technologies, remote monitoring has become more widely available and could serve this purpose.”

Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through Stanley Manne Children’s Research Institute. Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine.
Research Brief: Advanced Practice Providers’ Influence on Surgical Trainees 
Advanced practice providers (APP) play key roles in contributing to the successful training experience of surgeons, and a new study published in Journal of Surgical Education provides some insights into how advanced practice providers, surgical trainees, and surgical faculty view these roles.

Key Takeaways 

  • After analyzing 40 transcripts of 51 interviews with advanced practice providers, residents, and faculty from 15 general surgery programs, the researchers identified four themes: APP as Educator, Canary in the Coal Mine, Division of Labor, and Second-Class Citizen. 
  • APPs and residents noted how APPs play a significant role in the education of residents to ensure patient care and allow surgical trainees room for clinical growth. 
  • Due to their close working relationship, APPs were often the first to notice changes in a surgical trainee’s mood or behavior, and they reported providing support to and intervening on behalf of surgical trainees. 
  • Clinical workload distribution among the team has a direct impact on APP job satisfaction and surgical trainees’ educational experience. 
  • APPs described experiences in which their expertise was disrespected, and their contributions were overlooked or dismissed. The authors of the study concluded that hospitals and residency programs have an opportunity to correct this through increased recognition of the roles of APPs and elevation of APP expertise through career development pathways. 

Three researchers from Ann & Robert H. Lurie Children’s Hospital of Chicago—Audrey Rosenblatt, PhD, APRN-CRNA, Certified Registered Nurse Anesthetist, Anesthesiology, and lead author; Heather Ballard, MD, Attending Physician, Anesthesiology; and Yue-Yung Hu, MD, MPH, Attending Physician, Pediatric Surgery—and collaborators from Northwestern University Feinberg School of Medicine contributed to the study. Pediatric research at Lurie Children’s is conducted through Stanley Manne Children's Research Institute.

Article Citation 

Rosenblatt A, Ballard HA, Amortegui D, Yuce T, Bilimoria KY, Johnson JK, Yue-Yung Hu Y-Y. Invisible Work: Advanced Practice Providers’ Role in the Education of Surgeons. Journal of Surgical Education. 2022 July 19 (Epub ahead of print). doi: 10.1016/j.jsurg.2022.06.015
New Survey of Chicago Parents Finds Disparities in High-Speed Internet Access
Findings important in designing equitable digital health service
Parents who identified as Hispanic/Latinx or Black were less likely to have reliable, high-speed internet than White parents, according to a survey from Ann & Robert H. Lurie Children’s Hospital of Chicago published in the journal JAMA Network Open. However, after adjusting for income, the disparity in access to high-speed internet persisted for Hispanic/Latinx families but not for Black families. These differences may be attributed to residential segregation in Chicago, with broadband resources potentially limited in minoritized neighborhoods.

“It is important to clarify which populations might have challenges accessing video-based doctor appointments and other digital health services that are becoming more widespread since the pandemic,” said lead author Kristin Kan, MD, MPH, MSc, a pediatrician at Lurie Children’s and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “As we continue to develop these services, we need to make sure we provide equitable access to all families.”

Dr. Kan and colleagues conducted a survey of 1,620 Chicago parents. Over 90 percent of parents reported having a desktop/laptop at home and 77 percent reported having reliable, high-speed internet. Sixty-five percent of Hispanic/Latinx families had reliable high-speed internet, compared to 76 percent of Black families and 89 percent of White families.

Data was collected through the Voices of Child Health in Chicago Parent Panel Survey, a triannual survey of Chicago parents about child, adolescent, and family health and well-being. Parents in the panel are from all 77 neighborhoods in Chicago.

Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through Stanley Manne Children’s Research Institute. Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine.
Chicago Children Not Getting Enough Physical Activity
Parents Can Empower Their Children to Exercise
Despite the overwhelming benefits of physical activity and fitness in growing children, the latest survey from Voices of Child Health in Chicago at Ann & Robert H. Lurie Children’s Hospital of Chicago revealed that most Chicago children are not getting enough exercise.

In fact, the survey found that only one-third of children ages 1 to 5 years old were physically active most days of the week, contrary to recommendations from the American Academy of Pediatrics (AAP) and the World Health Organization (WHO).

The survey from the hospital’s Voices of Child Health in Chicago found:

Only 1 in 3 children engaged in physical activity most days of the week.
Both younger children and elementary-aged children were getting less exercise than recommended.
Parents may not be aware that their kids are not getting enough exercise.
“Results from our study show that many children aren’t getting enough physical activity. Parents can talk with their child’s health care provider about how much physical activity children is right for their child and about ways to encourage children to incorporate more physical activity in their daily routines,” 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.

Obesity can lead to a host of other health problems for children including early onset heart disease, high cholesterol, liver disease and type 2 diabetes. Exercise prevents these and has a myriad of other benefits by promoting better sleep, improved mood, healthy muscles and bones, coordination and social skills.
In the survey, only one-third of 1-5-year-olds had enough daily physical activity to meet AAP and WHO recommendations, which call for active play four or more days of the week. For children ages 6-7, 43 percent met AAP guidelines that call for physical activity four or more days of the week.

Physical activity in early childhood and elementary school can include all things that help keep children fit such as jumping rope, tag and hopscotch, and traditional sports such as running, swimming or baseball.
“Encouraging physical activity for kids is a great way for parents to help children establish healthy routines early in their lives. Families can also use physical activity as way to spend quality time together as family, such as playing at the playground, going for a walk, or playing a game of tag,” said Dr. Davis.

Although many children in the survey did not meet recommendations for daily physical activity, a majority of parents (68 percent) stated that their child was either “very much” or “quite a bit” physically active on a typical day. This may suggest that parents are not aware of their child’s lack of exercise, according to survey organizers.

For help, parents can turn to the AAP’s physical activity checker stopwatch, a resource to assist them so their children can meet physical activity recommendations. Parents can also help by incorporating walks or games into their families’ routines that involve exercise.

This report is based on data from the Voices of Child Health in Chicago Parent Panel Survey. The survey is administered to a sample of Chicago parents by Lurie Children’s and NORC at the University of Chicago via internet and telephone. The survey is administered to parents from all 77 community areas in Chicago three times each year. The data in this report was collected from October through November 2021. The overall sample consisted of 1,142 Chicago parents, step-parents, or guardians who had at least one child under 18 years of age in the household (referred to as “parents” in this report). For this report, the focus was on a subset of parents of children ages 1-7 years old who answered questions about their child’s physical activity.

Population-focused child health research at Lurie Children’s is conducted through the Mary Ann & J. Milburn Smith Child Health Research, Outcomes, and Evaluation Center at the Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of new knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals in U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 223,000 children from all 50 states, Washington D.C. and Puerto Rico, and 37 countries.
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