2020 Outcomes Report Portland Shriners Hospital

Basic Research Conducting contemporary, meticulous and innovative research to improve patient treatment and care and increase the body of medical knowledge and understanding of injury and disease is the cornerstone of the overall mission of Shriners Hospitals for Children. Over the years, our researchers have made major, significant breakthroughs, improving the care and quality of life for millions of children with these conditions.

Clinical Research In our clinical research department, we examine new treatment modalities, as well as outcomes associated with treatment, in order to continuously improve the clinical treatment and care of our patients. The clinical research department at the Portland Shriners Hospital provides a comprehensive infrastructure that supports internal investigators in every stage of the research process. In addition, the department provides centralized management and oversight functions related to the activation and conduct of clinical trials.

Discovery of biomarker CXM In order to provide the best care, it’s important for each child’s care team to understand how quickly their bones are growing, because, depending on a child’s condition, the rate of their growth can determine when the best time is for them to receive care. In 2017, the Portland Shriners Hospital research team, led by William Horton, M.D., made an innovative discovery that impacts how physicians are able to track a child’s rate of growth. Through a simple finger-prick blood test, the research team discovered a protein (which they’ve named the biomarker CXM) that mirrors the child’s rate of bone growth. By using the biomarker CXM, physicians are able to quickly predict the rate of the child’s growth, and they can immediately make decisions about the medical care plan for their patients. Since the discovery of the biomarker CXM, Michelle Welborn, M.D., has analyzed how this finger- prick blood test could help her provide the best care for patients who have scoliosis and other spine conditions. “Assessing a patient’s growth is a vital factor in determining the treatment for patients with scoliosis,” said Dr. Welborn. “By determining the rate of growth in real time, we can make sure that we are bracing patients for the correct amount of time, and that we are performing surgery at the optimal time. The utilization of biomarker CXM will enable us to build the best possible plan of treatment for patients, and it can minimize the amount of surgeries needed.” “Until now, no one has figured out how to track growth as it is happening,” said Dr. Welborn. “We now have the ability to predict growth instantaneously. Think about how many lives this will change across the world!”

Camps help children with cerebral palsy improve functionality In 2019 and 2020, the clinical research team hosted a series of day camps at Shriners Hospitals for Children – Portland for patients experiencing a form of bilateral cerebral palsy. The program is part of a larger study including Shriners Hospitals for Children — Lexington and Columbia University. During the camp, children participated in 90 hours of intensive motor learning intervention, based on a program called HABIT-ILE (Hand-Arm-Bilateral Intensive Training – Including the lower extremities). The program is based on the child building strength and skills through games and play. Before camp, five goals were established for each patient, such as brushing their hair, making their own lunch or dressing themselves. In order to accomplish these goals, each child was assigned to two interventionists as well as physical and occupational therapy staff who developed games that build strength and encourages similar movements that are reflective of their goals. “If you or I were trying to learn something new, we would do it again and again and again,” said Susan Sienko, Ph.D., research specialist, research specialist at the Portland Shriners Hospital. “This camp is that same concept – the movements are really repetitive in order to help them learn the motor skills and motions needed to help them meet their goals.” Once completed, the studies from camps held at all three sites will be one of the largest randomized studies for HABIT-ILE.

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