AnnualReport2020

Research Report

The research programs department initiated a reorganization of Shriners Hospitals’ clinical research enterprise by implementing a new clinical research coordinator (CRC) job description across our system. A CRC is a specialized, independent research professional who is the primary liaison between a physician investigator and a patient enrolling in a research study. The CRC provides oversight and compliance for both system-wide and local clinical research activities by ensuring proper study conduct and subject safety, as well as data quality and safeguards. The new system-wide job description not only defines the qualifications and duties for our CRCs but also revises their reporting structure to lessen the possibility of deviation from our health care system’s approved regulations. In addition, we are spearheading networking opportunities among our cadre of CRCs to encourage system-wide multicenter clinical research projects. With this in mind, we sponsored the first-ever clinical research enhancement workshop that brought together CRCs from 19 of our sites. We plan to hold biannual clinical research enhancement workshops not only to provide a forum for educating our clinical research community on the latest regulatory changes and updates but also to share feedback with our research programs department on ways we can better serve the needs of CRCs system wide. Another important initiative for advancing clinical research programs was the second annual State of Research Symposium – Special Emphasis on Muscle and Bone Health – hosted by Shriners Hospitals for Children — Chicago and co- sponsored by our department. There were selected presentations from 96 attendees from across our sites,

including 25 physicians/surgeons and two directors of research. Also in attendance were members of our research advisory board and Joint Board members. Also new this year, we entered into an affiliation agreement with the Georgia Institute of Technology to support clinical research programs between our physicians/surgeons and Georgia Tech engineers. One project underway aims to develop a wearable customized robotic exoskeleton with voice recognition for children with cervical spine injury. Scott Kozin, M.D., hand surgeon and chief of staff of Shriners Hospitals for Children — Philadelphia, and Jaydev Desai, Ph.D., professor of biomedical engineering at Georgia Tech will be collaborating on this project. Additionally, Aaron Young, Ph.D., assistant professor of mechanical engineering at Georgia Tech, is working with David Westberry, M.D., pediatric orthopedic surgeon at our Greenville hospital, on a smart robotic exoskeleton designed to address excessive knee flexion (crouch gait), a condition common in patients with cerebral palsy. The Shriners Hospitals for Children Genomics Institute continues its mission to perform next generation DNA sequencing of samples from patients enrolled in the genomics study of our patients and their families. Kamran Shazand, Ph.D., director of the Genomics Institute Laboratories, in collaboration with research programs staff, and Gary Gottesman, M.D., the Institute’s medical director, have established best ethical and regulatory practices, including Western Institutional Review Board (WIRB) approval of the Genomics Institute protocol. For patients who voluntarily enroll in our genomics study, a saliva sample is obtained and shipped

A Message from our Vice President of Research Programs

Conducting research is a core component of Shriners Hospitals’ three-part mission. The research programs department provides oversight of Shriners Hospitals for Children’s research activities with the overarching goal of improving the care and quality of life of children who have conditions treated by our health care system. The department directs, facilitates and supports research in our sites by awarding research grants through a peer- review process; providing grants fiscal management; developing and supporting research facilities and by overseeing regulatory compliance matters and ethics issues, including the informed consent process for pediatric research subjects. The department has implemented a strategic plan to better align our research programs with clinical areas of focus and strength, and to raise Shriners Hospitals for Children’s international clinical research profile and reputation. We are pleased to report 2019 was a pivotal year in terms of achieving our strategic research objectives.

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