Standardising Orthopaedic Healthcare Outcomes (SOHO) registry
About
The Standardising Orthopaedic Healthcare Outcomes (SOHO) registry is a significant research registry based at The Children's Hospital at Wesmead. The SOHO registry is a novel, digital, prospective, longitudinal registry that collects Patient- and Parent-Reported Outcomes (PROs) in children and adolescents with orthopaedic conditions that receive care at the hospital. Up to 1,600 children with 15 different diagnoses are now actively participating in the SOHO registry. Ongoing PRO data is now available for up to 3 years in these children.
Aim
It aims to give children and their families a louder voice in their own clinical care and in rigorous, high-quality clinical research. To provide a meaningful way that facilitates a shared-decision making process to assess orthopaedic surgery on individual and cohort levels that goes beyond the x-ray.
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Priorities
- Pain and function of children undergoing care for scoliosis of the spine, comparing the impact of bracing treatment and surgery.
- A multi-centre prospective randomised superiority trial of operative fixation versus non-operative treatment for medial epicondyle fractures of the humerus (SCIENCE)
- Collaboration in a global paediatric musculoskeletal trauma registry with complete follow-up of trauma patients from baseline to skeletal maturity (PedORTHO)
- Functional improvement after hip reconstruction in children with Mucopolysaccharidosis.
- Pain and Quality of Life in children following surgical intervention for recurrent patella dislocation.
Impact
- The collection of PROs amongst adult orthopaedic registries has been highly successful in improving the quality and timing of orthopaedic procedures and improving patient satisfaction.
- Research yielded from the SOHO registry has begun to answer important questions regarding the true impact of orthopaedic diagnoses in the lives of children and their families, by placing the child and family at the centre of our research.