Shriners Hospitals for Children is committed to conducting research that will one day impact and improve lives, as well as increase the worldwide body of medical and scientific knowledge. Many of our clinical research projects are multicenter efforts that bring together physicians and scientists with similar research interests and different but overlapping areas of expertise. Here are just a few examples of current multicenter efforts.
Finding answers for children with ARTHROGRYPOSIS
- Canada (lead)
- Northern California
Arthrogryposis multiplex congenita (AMC), or simply arthrogryposis, is clinically defined as joint contractures at birth of two or more body areas, and it affects one in 3,000 individuals. Rare diseases such as arthrogryposis are often underrepresented in research, although research activities are essential to ensure the delivery of exceptional health care. The objective of this multisite, four-year study is to establish a registry that will provide the foundation for providing therapies for arthrogryposis that are innovative and evidence-based.
The registry will include data around risk factors, medical history, functional abilities, pain level and quality of life among 300 children with arthrogryposis. In a subset, next-generation sequencing will be performed on blood or saliva samples in order to identify genetic causes. This systematic recording of data will generate multiple research possibilities, ultimately leading to enhanced care and new treatment methods for children with this complex condition. (See more about AMC on page 5.)
Marking growth patterns in real-time to improve SCOLIOSIS treatment
- Portland (lead)
- University of Rochester
The biomarker CXM has the potential to revolutionize scoliosis treatment for growing children. As a patient-specific, low-risk, radiation-free, real-time assessment of bone-growth velocity, it provides critical information about health status, and it can guide orthopaedic care, especially the treatment of scoliosis, which is highly impacted by bone-growth velocity. There is a critical need to establish a clinically validated, patient-specific marker of real-time growth velocity so that the treatment of scoliosis can be individualized for the practice of precision medicine. Ultimately, we will use this knowledge in conjunction with CXM to develop a decision-making guide for the treatment of scoliosis, clarifying the timing of bracing versus growth-friendly surgery, versus growth-guided surgery, versus fusion surgery. Validation of CXM has the potential to fulfill the critical need to establish a real-time marker for bone-growth velocity to personalize the treatment of scoliosis.
Using machine learning to improve MOTION ANALYSIS
- Chicago (lead)
- Northern California
Shriners Hospitals for Children is an internationally recognized leader in clinical motion analysis, and our research programs department has supported several new multicenter research projects in motion analysis as part of its strategic plan. In the simplest terms, motion analysis brings the animation techniques used in Hollywood to the clinical and research setting. In our analysis centers, high-speed cameras, reflective markers, force platforms and muscle sensors record, measure and evaluate how a child with a mobility impairment actually moves.
The data collected helps provide an understanding of the interactions between the child’s muscles, joints and bones, which helps the patient’s medical team create an effective care plan. The goal of this project is to explore the applications of machine learning algorithms to quantitative motion analysis data to more effectively and efficiently recommend evidence-based interventions for pediatric patients with movement disorders.
ALL OF THE RESEARCH EFFORTS at Shriners Hospitals for Children are meant to one day improve available treatments for children with orthopaedic conditions, burn injuries, spinal cord injuries, and cleft lip and palate, and help fulfill our mission of improving and transforming lives.
TO LEARN MORE about our research efforts across the Shriners Hospitals for Children system, visit shrinershospitalsforchildren.org.