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Four Children’s Mercy Researchers Receive 2022 Pilot Awards from Frontiers Clinical and Translational Science Institute

STORIES

Four Children’s Mercy Researchers Receive 2022 Pilot Awards from Frontiers Clinical and Translational Science Institute

Headshot of Ana Cohen, PhD, FACMG
Ana Cohen, PhD, FACMG
Assistant Director, Molecular Genetics; Assistant Professor of Pathology, University of Missouri-Kansas City School of Medicine
Full Biography
Headshot of Caleb W Grote, MD, PhD
Caleb W Grote, MD, PhD
Clinical Assistant Professor of Orthopedic Surgery, University of Missouri-Kansas City School of Medicine; Clinical Assistant Professor of Orthopedic Surgery, University of Kansas School of Medicine
Full Biography
Headshot of Kimberly A. Randell, MD, MSc
Kimberly A. Randell, MD, MSc
Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Associate Professor of Pediatrics, University of Kansas School of Medicine
Full Biography
Headshot of Robin Shook, PhD
Robin Shook, PhD
Director, Kansas City Healthy Lifestyles Collaborative; Director, Translational Energy Balance Research Laboratory; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Research Assistant Professor of Pediatrics, University of Kansas School of Medicine
Full Biography

Four Children’s Mercy researchers received one-year, 2022 Lauren S. Aaronson Frontiers Clinical and Translational Research Pilot Program awards with their project periods starting in July 2022 and wrapping up in June 2023.

Ana Cohen, PhD, FACMG, Genome Center, received a grant for almost $50,000 from the National Institute of Health’s National Center for Advancing Translational Sciences (NCATS), via the Frontiers Clinical and Translational Science Institute at the University of Kansas subaward.

Her study entitled “Expanding Genomic Testing to Underserved Pediatric Populations” sought to leverage existing resources at the Children’s Mercy Research Institute (CMRI) to provide genetic testing to patients in rural settings, who would benefit from comprehensive genomic testing and more rapid results provided through the already existing Genomic Answers for Kids (GA4K) research pipeline.

As Dr. Cohen explains: “Patients with suspected genetic conditions are faced with 6-to-12-month long waitlists to be evaluated by a geneticist and/or genetic counselor, with additional wait times for insurance approvals after genetic testing is ordered. Given that a large portion of genetics referrals come from rural primary care providers (PCPs), which are typically the only point of care for patients in these underserved communities, we thought that enabling PCPs to order genetic testing themselves could significantly speed up access to appropriate medical care for their patients. And importantly, this would happen without any significant time/travel requirements for the families”.

The idea was for results to be reported out by GA4K genetic counselors before families even got to their appointment with genetics, thus allowing for immediate medical management changes, and potentially even helping move patients up the waitlist, as the wait times for new patients with a known diagnosis are substantially shorter.

Dr. Cohen and her team piloted this “direct-to-PCP” program by partnering with PCPs at the Salina Pediatric Care Clinic (KS). As of May 2023, 24 families had been successfully enrolled in the pilot program, with diagnoses confirmed for five families within 3-4 months of consent. Additional work was ongoing to estimate how much time-to-diagnosis can be systematically saved via this program.

“We believe that extending the reach of our program fosters equitable access to genomic research, molecular diagnoses, and downstream care and research for underserved populations, and we hope that lessons learned from this pilot program will allow for additional recruitment expansions,” said Dr. Cohen.

Dr. Cohen and her team also published a paper on the topic that appears in the journal Genetics in Medicine.

Caleb Grote, MD, PhD, Orthopaedic Surgery, received a $50,000 grant from the National Institute of Health’s National Center for Advancing Translational Sciences via a University of Kansas Medical Center subaward.

The funding was used for Dr. Grote’s project, “Hip Dysplasia Biomarkers and Biologic Mechanisms”.

Hip dysplasia is defined as a shallow hip socket that leads to under-coverage of the femoral head (ball) by the acetabulum (socket). It is more common in females and those with a family history. This change in biomechanics leads to instability, increased hip pressures and pain. Hip dysplasia is a known risk factor for arthritis and the need for total hip replacement, representing a significant socioeconomic burden.

As Dr. Grote explains, while there are decades of research describing the clinical and surgical treatment of hip dysplasia, it continues to be the number one cause of early hip replacement.

The goal of Grote’s study was to investigate differences in the structure and biology of patients’ hips to help predict hip dysplasia. This project aims to describe the correlation in changes to the chemical processes and substances of the hip joint tissue with blood biomarkers.

Dr. Grote believes this study was a first step in treating hip dysplasia more effectively, through earlier diagnosis and prognosis and better surgeries and medications.

“I’m very excited about this new world of research, and it’s just the beginning. I feel like this will impact the future of orthopedics as we figure out the biological and mechanical aspects. I’m also excited about working with Dr. Jinxi Wang (University of Kansas Medical Center), who is a renowned expert in joint biology and someone whom I consider a mentor,” he said.

Richard Schwend, MD, FAAP, FAOA, Orthopaedic Surgery, served as a collaborator on the project.

Kim Randell, MD, MSc, Emergency Medicine, received a grant from the National Institute of Health’s National Center for Advancing Translational Sciences via a University of Kansas Medical Center subaward.

The funding was used for Dr. Randell’s project, “Exploring Implementation and Sustainability of Youth Research Advisory Boards within Clinical and Translational Science Institutes”.

Dr. Randell and her team recognize the importance of working with youth as research partners across the full spectrum of research, from developing research questions and study aims to disseminating study findings and launched the Children’s Mercy Youth Research Advisory Board in 2022.

“Centering youth voices is a critical but often neglected component of adolescent health research. Drawing from lived experiences, youth can offer valuable perspectives on and solutions to problems they face, as well as key insights into research methods, data interpretation and dissemination of findings. Additionally, engaging youth from populations that are marginalized may provide insight into reasons for and solutions to health inequities that often begin in adolescence and extend into adulthood,” said Dr. Randell. “Addressing health issues through the lens of youth from marginalized communities may reduce the impact of inequities across the lifespan. Youth research engagement also offers direct benefits to youth, including increased agency and positive social identity. Further, youth-partnered research can catalyze interest and investment in STEM education and career planning, ultimately contributing toward a more representative scientific workforce.”

In this convergent, mixed-methods project, Dr. Randell and her team explored the gap between the opportunities presented by youth research advisory boards and our understanding of how to effectively operationalize them within clinical and translational science institutes (CTSIs). They assessed current use of youth research advisory boards within CTSIs nationally by surveying CTSI leaders and youth research advisory board members. They also looked at the Children’s Mercy Youth Research Advisory Board that launched less than a year ago to describe contexts, processes, and immediate outcomes during its first year of implementation.

Dr. Randell and team’s long-term goal is to contribute to adolescent health equity and a diverse scientific workforce by engaging youth as partners at all stages of research.

Robin Shook, PhD, Center for Children's Healthy Lifestyles and Nutrition, received a grant from the National Institute of Health via a University of Kansas Medical Center Research Institute subaward.

The funding was used for Dr. Shook’s study, “Translating Clinical Care to Public Health Practice: A Targeted Approach Using Electronic Health Records to Inform Community Health in a Pediatric Health System”. Dr. Shook’s study involved collaboration with Emily Hurley, PhD, MPH, and the Formative Research Team to conduct focus groups and surveys with clinicians, community organizations, and patients/families to better understand the strengths and opportunities around assessment of healthy eating, physical activity, and sedentary behavior in the primary care setting with the goal of creating a framework to guide Children’s Mercy Kansas City efforts in translating patient lifestyle-related needs into effective connections with community-based resources.

How safe and walkable is a child’s neighborhood, for example? How close does his/her family live to a grocery store?  By mapping the social environment, Dr. Shook wanted to shed light on the populations and neighborhoods in the Kansas City area that are most at-risk for childhood obesity. 

“The goal is to explore the complex causes of childhood obesity, such as neighborhood characteristics and other social factors, ultimately improving the way we treat childhood obesity,” he explained.

The second part of Dr. Shook’s study involved partnering with the University of Missouri-Kansas City Midwest Center for Non-Profit Leadership to complete an asset and system map of physical activity programs, and agencies– a database that can be searchable by members of the public. Dr. Shook hoped the mapping project would help health care providers connect families to YMCA programs, parks departments, and other local organizations that support a healthy lifestyle. 

You can read more about all of the projects that received 2022 Lauren S. Aaronson Frontiers Clinical and Translational Research Pilot Program awards here.

The contents are those of the investigator and do not necessarily represent the official views of, nor an endorsement, by NIH, or the U.S. Government.